Life itself changes the 'Meaning of Life'

On the 2nd day of Christmas ...

2011-12-26T18:02:00.000Z

It seems obvious for the 2nd day to talk about twins. I know several sets of twins who both have Down's Syndrome, but today I'd like to mention a family who have one twin who could use our thought and prayers.

May I introduce the Hext twins, 5 year old Harvey and Spencer who you may have seen on this years Noel's Christmas Presents when their family went on a trip to Lapland and the boys met another set of twins, Jedward.

Harvey and Spencer Hext

Spencer and Harvey are identical twins who have Downs syndrome, which makes them fairly unique as there are only a handful in the UK, but Harvey is even more unique. In June 2010 he was diagnosed with stage 4 Neuroblastoma, a very aggresive childhood cancer and he is the first documented patient in the world to have Down's syndrome and be treated for it, meaning that there are no comparable reference points for his treatments, as the medical team have no experience on the amounts of drugs his modified genetic makeup will cope with.

Harvey has amazed his family and his doctors with the way he has coped with the chemotherapy and MIBG therapy he has been given, he has also recovered very well from a 14hr operation to remove the primary tumour in his stomach, but throughout the awful treatment he has had to endure, he has remained spirited and inspirational. Sadly though,

Harvey has not responded to the chemotherapy as everyone had hoped he would and although his consultants are still treating Harvey's cancer as cureable at the moment, treatments in the UK for Neuroblastoma are limited so his family are currently looking to raise £300,000 as it is most probable Harvey will need treatment abroad that is not covered by the NHS.

If you would like to donate to Harveys fund please do so using this link FAN Harvey Hext (Donating through this page is simple, quick and secure and if you are a UK taxpayer and give Gift Aid consent the charity will receive extra at no cost to you.)

On the 1st day of Christmas ...

2011-12-25T21:41:00.000Z

I'm hoping to find time to make a blog post every day of the 12 days of Christmas, primarily about friends with Down's Syndrome, but I'd like to start today with a short blog in honour of my mum. Right from the time my special boy was born, she accepted him without question and was supportive of my work with Down's Heart Group. So I think it only fitting that I start with her as she was the primary influence of my formative years and instilled in me the values of acceptance and inclusion that are at the root of everything I do.

A week ago the wonderful lady that brought me into the world had her 88th birthday and today we shared an hour of companionship together at the care home where she has been resident for the last 9 months. We sat and chatted as she opened the cards and presents that I had taken in for her and whilst it didn't match the level of communication that we shared in the past, I was thankful that today she was at least aware of who I am.

Mum and I during my visit today

The past 12-18 months have been a difficult journey for me as I've had to come to terms with her diagnosis of dementia and the rapid deterioration she has experienced. It's been hard to watch someone who was so fiercely independent and capable become totally reliant on assistance from carers and harder still to witness her memory loss which means that much of the time she has no idea who I am. But, I'm trying to see something positive in all of this and perhaps my experience will in some way help me support families who sadly have to face a diagnosis of Alzheimers in their loved one with Down's Syndrome.

I started out nearly 22 years ago with the idea of using my experience of having Daniel - getting the diagnosis, going through the bowel and heart surgeries and his death - to try and help other parents in some way, so I'm trying to approach mum's diagnosis in the same way. Mum's thankfully unaware of her situation which I am so grateful for and from my point of view I'm trying to see what I am learning as something which gives me firsthand knowledge that I can hopefully pass on to others.

To my beautiful boy on your 22nd angel anniversary

2011-11-13T00:00:00.000Z

A letter to my angel in heaven who shared such a brief time with us and yet made such a huge impact on our whole family.


The t-shirt from my fundraiser in 2010 to mark my 50th and your 21st

Well, as usual at this time of year, I'm having a hard time coping with the poppies that everyone is wearing and at least one stranger has felt the need to point out my lack of respect for not wearing one.

I'm usually quite happy to talk to anyone about you (even losing you), but this is the one time of year that it's just too hard and I wish people wouldn't be so quick to judge. I totally respect Remembrance Day and what is stands for, but it's just such a strong part of my memory of the hardest day of my life. The Royal Albert Hall service was the last thing your dad and I watched on television before going to bed and being woken unexpectedly by that call from the hospital, so even now I can't handle that link -it just brings back that memory so vividly of being told were gone!

So many flowers for such a little person

I was laying in bed last night thinking about you and the fact that I carried you and was your life support for longer than you were actually with us and how so suddenly and unexpectedly you were gone. I'd known you were poorly but had never really thought that we would lose you and suddenly after 100 days you were gone. How could I cope with that? Why had it happened? What sense did it make? I went through the motions, largely for your big brother, Andrew, who was after all only 18 months old himself. He had spent a lot of time those previous weeks visiting you, he knew you belonged to us and idolised 'his baby' and somehow I had to explain your going in a way that he could understand when I couldn't really understand it myself.


You and your big brother Andrew - a rare photo of you awake

I felt so alone and surrounded by people who didn't understand what I was feeling and my lifeline was Down's Heart Group where I found other bereaved parents to talk to, so I guess it was only natural that I should eventually want to try and give something back. Somehow it seemed to make some kind of sense of your short life to use what I had experienced to try and support other parents going through the same thing and the organisation was an obvious way to do that.

Well that was all many years ago now - I carried out my first official Down's Heart Group task on April 22nd 1990 (I remember the date as it was Andrew's 2nd birthday) and I had no idea back then of the incredible journey I was embarking on. It has been amazing: I've travelled to different countries, met famous people, been on TV, radio and in the papers, but MOST OF ALL I've met the most amazing people who all share one thing in common, an acceptance, understanding and love of people with Down's Syndrome.

About 6 hours old - the first time I really got to hold you

And without you Daniel, it would never have happened. I am so grateful that we had no idea of your problems before you were born because if I am honest, I know there is a chance that had we known, we might have made a choice to end your life in the womb given your medical issues and the potential impact on your big brother. I'm certain that I would have been convinced that there was no way we would be able to cope with it all, but of course we did because you were our baby, our precious boy and we knew from the start that no matter what we would love you and fight for you as hard as we could. It's amazing what hidden strength you have when you need it!

Your emergency Christening waiting for the ambulance to Great Ormond Street Hospital

You changed my life Daniel - at first it was hard to cope with the pain of your loss, but now I can look back over the past 22 years and whilst it still hurts to think of you and wonder what you would be like now, I have so many positive memories to counter it with. Thank you for introducing me to this wonderful community, where I have met so many inspirational people who have enriched my life - you truly were a gift, I cherish my memories of our short time together and I am honoured to be your mum.

Dedicated to the boy who started me on this incredible journey,

to all the wonderful individuals and their families that I have met over the past 22 years, those I've hopefully yet to meet and with special love and hugs to all those whose loved ones have also earned their angel wings.

Language and how we each use it

2011-10-21T16:20:00.000+01:00

All the media attention surrounding Ricky Gervais got me thinking last night, particularly about my own use of language and how that has changed over the years.

When I was a child, my cousins whom I spent lots of time with, lived near to the local 'mental hospital' as it was called back then. It was the typical building of it's type, large. cold and imposing behind high walls and as a small child I remember being scared of going past as our understanding at that time was that it housed 'mad people', which to our young minds and limited knowledge meant people the likes of Myra Hindley who would surely murder us if they could get to us. Occasionally one of the residents would escape from the confines of the grounds somehow and the reporting in the local press only added to our misunderstanding as they talked of 'escaped inmates' being 'potentially dangerous'.

By the time I reached my early teens, I had come to a better understanding and believed that the occupants were people who have mental health issues and presented as much of a danger to themselves as others if allowed to wander about in our community. Then I had an experience that provided me with a greater insight when my dad had some kind of 'turn' (I really can't be more specific than that as the doctors never could provide an explanation) and suddenly seemed to forget about the past 20 odd years of his life. He was initially admitted to the psychiatric ward at our local hospital and then transferred to a London hospital for further testing, during which he suddenly came out of whatever was happening and after several weeks of complete memory loss, was completely back to his old self at the complete bafflement of the medics.

This was my enlightenment to the fact that mental health issues can affect anyone and that referring to 'nutters and lunatics' was not something that was acceptable - those words along with others such as 'loonybin' were removed from my vocabulary as I became more aware of the potential impact that such words might have on those around me who might have links with individuals to whom these words would commonly be applied. I guess the experience with my dad (actually my step-dad but the only father I had ever known) and also the fact that my mum had suffered so much, even from her own family due to my illegitimacy, made me very conscious of how easy it is to cause distress to others, even unintentionally.

"I was a student nurse at Leavesden Hospital in the early 1970s. The wards were

big, tall, bleak buildings three floors high. They were cold inside with tiled walls."

from Out of Sight, Out of Mind? project website

Some years later life added another lesson for me. We had been through the grief of learning his diagnosis and that he had major heart and bowel issues, come through that and accepted him as our son only to then have to endure the further grief of his loss when he was 100 days old. It was a major life changing experience that pretty harshly pointed out the attitudes of some people whom we had previously thought of as friends and it made me once again reconsider how my words and actions might impact on those around me. I knew that whilst I would doubtless make mistakes and say things that would upset and offend others, I would make a sincere effort to be aware of my use of language and to actively encourage others to do the same by politely pointing out when words and phrases were used that could be upsetting in certain contexts. (not to necessarily stop people using them, but to make them aware of situations where they might want to choose an alternative).

It was in relation to our son that some years after his death, Leavesden Hospital was to enter my thoughts again. My aunt had actually worked nights there as a nurse when I was young and at a family gathering we got to talking about Daniel and Down's Syndrome at which point she said to me "of course I nursed lots of people with Down's at Leavesden". I was stunned, not because I was unaware of the fact that people with learning disabilities had been institutionalised, but I have never made that connection in my head with a group of people that I had now come to understand and feel a strong connection with and that terrible, imposing, prison like building of my past. She told me some heartrending stories of how the staff were not allowed to interact with them, how many had been there since they were small children and never had visitors - it was very distressing to hear, but even more so to think that it had been happening so close to me and in my lifetime.

When you read these things, they often feel quite distant and remote,

but this took place just 30 odd years ago and involved a much loved aunt

- I was deeply shocked at that realisation. The hospital finally closed in 1995.

So, getting back to language and it's use, I appreciate that it would be a mammoth task for everyone to be fully aware of the potential issues surrounding the use of every word, particularly in an area that they have no personal experience of, but I do think that if it is pointed out to you that your usage of a particaulr word or phrase is causing distress to others, you have a clear choice to either stop using the word or to totally ignore the feelings of other people. Perhaps if only one person is upset by the word, then you can argue that they are being over-sensitive and feel comfortable disregarding them, but when a good number of people express concerns, I personally think you have a moral duty to think about your actions.

I am just a small insignificant person in this world, but I feel obliged to consider and respect my fellow humans, regardless of any differences in race, colour, religion etc. I don't have to agree with them, but I should afford them the same courtesies that I would expect from them and whilst I may not always get it right, I will strive to do my best and apologise for my failures when they happen. In my humble opinion, people that are in the public eye have generally been placed there by the smaller more insignificant amongst us and as such I feel that those people also have a duty to consider and respect others, in fact probably more so. Many well known individuals have used their success to actively support charitable efforts and champion the cause of others who are less fortunate, it's a shame that others seem intent on just the opposite.

Ricky Gervais and his use of the word "mong"

2011-10-20T10:47:00.001+01:00

I have of course been involved in commenting and expressing concern about this well known comedian's use of this word which he says has a new meaning and has nothing to do with Down's Syndrome, but which is seen as highly offensive by many people who have a connection with the condition.

Daily Mail: Ricky Gervais sparks anger for 'two mongs don't make a right' comment on Twitter

As well as those who have found it offensive there have been many others who have spoken out about freedom of speech and oversensitivity of certain groups - this morning I took part in a debate on Radio 5 Live Breakfast Your Call (on iPlayer for next 7days)

Well, I'm sorry, but I don't find it funny to laugh at the misfortune of others - even some of those "You've been framed" videos where people have agreed to showing their accidents make me say ouch and feel sorry for them. If I use a word or phrase that is distressing to someone without realising and they point it out to me, I will try really hard to never to do it again and if it slips out I feel terrible.

When possible I try tactfully to point out to people that we refer to people with DS as people first ie "a person with DS" not "a DS person" and I would listen and respond to anything similar someone explained to me about another condition. We can't be expected to know everything about the use of different words in other countries or different fields of interest, but that doesn't mean we can choose to ignore the affect they have on others when it is pointed out to us.

In 2009 I experienced something that many of you may never do and it got me thinking. I was for the vast majority of a 10 day visit to Nigeria, the only white person and as such was the object of quite a lot of interest from the public. No-one did or said anything hurtful or offensive to me and I never felt in any way threatened, but that did not stop me feeling that all eyes were on me and that I was being singled out for attention - I realised that it must be like that pretty much every day for someone with DS once they are old enough to be aware that they are different. It must be a pretty hard thing to live with all your life, even without direct taunting and with the love of family and friends around you.

Ours is a sad society when we feel it is acceptable to go around making fun out of people who are 'different' despite the fact that we are so called 'educated and enlightened' - surely we should be realising that everyone has feelings, everyone wants to be loved and to belong and EACH and EVERY one of us should be trying to promote that, whoever we are, but more so if we are in the public eye and can share that example with so many others through our work.

Someone like Ricky Gervais is in a position where he could do so much good if he chose to, in fact some people claim that he has already done a lot to highlight disability issues, in which case why does he not seem able to understand why these comments are so upsetting to our community and at least refrain from further use or apologise? I certainly wish I had his money and opportunities to make a difference, but if he doesn't want to help, then he could at least stop hurting those we love!

Update October 22nd
Well it appears that Ricky Gervais has finally realised how upsetting this has been for many people. He still says he meant no harm and had not realised that anyone still linked the word with Down's Syndrome, but he has apologised directly to Nicky Clark who was one of those who spoke out about the distress to families. She posted details on her blog Nicky Clark and last night the Daily Mail online posted an article about the apology. Hopefully that is the last we hear of Mr Gervais using the word and perhaps he will react a little sooner in future if he unintentionally uses a word that causes upset and distress to a group of people. Thank you Ricky for being a big enough man to say sorry.

World Down Syndrome Day - asking United Nations for official recognition

2011-09-07T12:27:00.007+01:00

This is going to be a very short post, but I have some important news and a request that I wanted to share.

Today, 7th September 2011, representatives of Down Syndrome International (DSi) are at the United Nations asking them to officially recognise March 21st each year as World Down Syndrome Day. There is an online petition where you can register your support for this and we need as many people as possible to sign up and pass the message on to other parents, relatives and support groups across the world.

127 signatures at 9am GMT on 7th September 2011

Petitions by iPetitions.com | Get Widget

(Link takes you straight to the petition, scroll down to signature box. Sign in with email or Facebook, leave a comment if you like (when you click the 'sign now' link you will be taken to page that asks if you would like to donate to keep the website running but you can just leave at that point and your signature will be registered).

And then make sure you join the World Down Syndrome Day group on Facebook and sign up for the World Down Syndrome Day 2012 event on Facebook and join us in making 2012 a truly memorable worldwide celebration on 21st March 2012!

Reflections on the past year

2011-08-26T12:02:00.001+01:00

I guess many people find themselves on birthdays, reflecting on the events and changes of the past year, but I have to say it's unusual for me. Normally I tend to spend August 2nd trying to be positive and upbeat for my daughter and then as night falls it's usual for my mind to turn to 1989 and the events that were to change my life forever. Maybe this year was different, perhaps because there have been some major changes in my life over the past 12 months or maybe it's because this year my beautiful daughter Sarah turned 18 and the baby of my brood is no longer a child?

The night of her birthday we sat and had a heart to heart and for the first time I discovered that as hard as I've tried over the years not to let it, her birthday has always been overshadowed by her brother's birthday the next day. At first I was deeply upset to think that I had let that happen, but as we talked I began to realise that perhaps it was inevitable whatever we did as she is a sensitive and passionate young lady who has been brought up around people with Down's Syndrome and has a knowledge and understanding way beyond most of her friends. I hope that she never experiences the loss of a child, but somehow I feel that if she did she would already be partly prepared to deal with it. Growing up with the knowledge and loss of her brother and with them having birthdays so close to each other, she has a much greater understanding of that loss than others who have not experienced it.

So back to the past year and the changes, it's been a tough one in many ways with all the issues surrounding my mum, the diagnosis and quick progression of her dementia and all the difficult decisions that required. Like for so many other people, finances have been a big concern and not only personally but for the Down's Heart Group too, which in itself places additional anxiety on our family. There have been incidents where I have been verbally abused and my intentions and commitment questioned to the extent that I have considered 'throwing in the towel' and moving on to another job, but then almost like magic someone comes forward that needs help and support, my faith is renewed again by the comments of my friends in our very special global community and I am able to move forward again.

22 years ago at a time when I felt most alone and in despair, I found support from others who had traveled the road before me and even now it is the members of the Down's Syndrome community who lift me up when I am feeling low - our children are truly a unique and wonderful gift and the bond between our global 'family' is a strong and powerful one for which I am forever grateful. When I volunteered to help Down's Heart Group all those years ago I had no idea of where that would take me, I just felt that if I could use my experience to help one family it would make some sense out of Daniel's short life.

I hope that I've managed a little more than that over the years, because I know that I have gained so much from my involvement with this community and that I owe so much more to my wonderful friends that make it up.

In Memory of our Son

Many times the hour-glass has turned
Since you left this place.
So many times our hearts have yearned
Once more to see your face.

So brief your visit here below,
A fleeting time on Earth.
Sometimes it’s hard to understand
The reason for your birth.

But we are deeply honoured,
And very, very glad,
That someone up in Heaven
Made us your Mum and Dad.

You taught us many lessons.
Showed us a different way.
You’re always in our thoughts,
Every single day.

My bid to carry the Olympic flame on behalf of the global Down's Syndrome community

2011-08-12T20:50:00.001+01:00

Link to my entry

Life is so hectic at the minute I'm not sure why I've decided to add to it by trying to do this as well, but it would be an INCREDIBLE HONOUR to represent the global DS community and raise awareness in this way if I were chosen.

Here's the video I made as part of my bid - it's not very good as there was a set format and it was difficult to get photos that would work, but hopefully it gives an idea of the message I'm trying to get across.

If you would like to support my bid, I think you can 'like' it from anywhere in the world (just click the 'like' button under the photo of me with pink hair. To post a comment you have to register either through FB or directly but you can only do it if you are in the UK (although I think a few people have fibbed) - then scroll down below the green box of 'My hopes and dreams" to the yellow/orange box that says "I like Penny's nomination because..." click in there and you have 140 characters to post your comment.

THANK YOU all so much! I'm sure I won't be picked with all the energetic young people that are entered, but perhaps the pink hair will get me noticed and I SO WANT to do this for all my wonderful friends around the world. Perhaps my t-shirt should say "People with DS rock!" or how about "I don't just love some1 with an extra Chromosome - I love them ALL!"

Suggestions will be requested if I am successful.

Link to my entry

It's so easy to help Down's Heart Group and it needn't cost you money!

2011-05-24T10:56:00.003+01:00

47% of babies born with Down Syndrome have a congenital heart condition.

See how easy it is to help Down's Heart Group support a better life for them by visiting our fundraising page. http://www.dhg.org.uk/fundraising.aspx

Forgotten memories

2011-05-22T21:51:00.001+01:00

Since my mum went into residential care due to her dementia, I've been going through sorting out her things, old photos etc. and I've found lots of bits and pieces that she'd kept that I'd forgotten all about, including a poem I wrote some time ago.

Over the years I've quite often found that Daniel's birthday and anniversary spur me into writing poetry. I've kept copies of lots of them, but not this one, so I was surprised to find it amongst mum's keepsakes.

Natures Gift

Some of the most beautiful things in nature

Have but a fleeting existence in time,

Yet those who are privileged to know them

Cannot fail to be moved by the experience.

Think of the exotic butterfly, starting off
As a hairy caterpillar, then as a papery chrysalis
Finally to emerge in all its glorious splendour
For such a short moment of its life.

Just when all its hidden beauty is revealed
It is snatched away for ever, when only a few
Will have been touched by its tragic story,
But for them it will have a lasting effect.

So it is when a special child joins your family.
At first it may be difficult to see beyond the problems
But in time their true inner beauty will be revealed
And fill all who come to know them with wonder.

But like the most glorious things in nature
Their visit may only be brief - just time for us to learn.
Remember with joy and love the gift they gave to you
For it is that which is important, not their length of stay.

Take strength and courage from the lessons you have learnt,
And know that you have been blessed, for you have seen
The inner beauty that many others cannot see.
You can look beyond the disability and take pride
In knowing the child will always be part of your family.

More on Safe and Sustainable - proposed changes to children's heart surgery service in the UK

2011-04-05T19:31:00.000+01:00

Spent this morning at a Health Impact Assessment stakeholder forum where we discussed the impacts, mitigations and opportunities of the proposed changes. As many people as possible need to provide their comments using the response form before July 1st, this is your opportunity to feed into the process.

Before you complete the form, you might find it helpful to at least take a look at "Safe and Sustainable: A New Vision for Children's Congenital Heart Services in England - Consultation Document" to increase your understanding of what the process is trying to achieve and how they arrived at the four options that are under consideration. Although you may have read media reports that suggest this a cost cutting exercise, it's important that you understand that

professional associations and national parent groups, who take a global
view of these issues, have repeatedly called for a review of children’s heart surgery services.

Although this is a direct quote from the consultation document, I include it here because I know from personal involvement that this statement is true. The aim of this whole process is ensure that this is a national service, with national standards that ensure that all children get the very best care wherever that is provided. Whilst the majority of families are already happy with the care their child is receiving, realistically most have no experience of another unit with which to compare, but national support groups are ideally placed to see a more national picture and have been heavily involved in seeking these changes.

Parents are naturally concerned about how these changes will affect them personally, but in order to make the best decisions, it is vital that everyone looks at the proposals impartially so that the focus is on the most important issue, that of giving children the very best chance in life. When thinking about these changes we also need to understand that they are not recommending closure of any units, the proposal is only to reduce the number that actually undertake surgical procedures, which would mean that families will only potentially have further to travel when a child is having surgery and for nearly 98% that will be only once or maybe twice in their life.

We need to ensure that during these times, families are given better support to overcome the difficulties that may be compounded by being further from home but whilst recognising these and other issues, we cannot lose sight of the evidence that supports the need for change. Evidence that shows a relationship between the number of procedures and surgeon undertakes each year and the outcomes for the children involved, not just looking at mortality but also morbidity.

It's also worth remembering that whilst this is a national process, it will not be the first time that a heart unit has stopped carrying out surgical procedures yet remained as a cardiac centre. During my 20 years involvement I have seen several similar changes - in Scotland, Royal Hospital for Sick Children in Edinburgh sends patients to Yorkhill in Glasgow for surgery, Manchester Children's Hospital uses Alder Hey Children's Hospital in Liverpool, the University Hospital of Wales in Cariff sends patients to Bristol Children's Hospital and when the Royal Brompton and Harefield Hospitals combined, surgery stopped at Harefield.

So take a look at the consultation document, at the very least read section 2 and then make sure that you complete the response form online or request a hard copy and check out details of the consultation events for one in your area where you will have the opportunity to hear the proposals in more detail and discuss your personal concerns.

Safe and Sustainable - proposed changes to children's heart surgery service in the UK

2011-03-23T09:20:00.000Z

Well I've purposely stayed away from this subject till now because I understand how high emotions are running in many parts of the UK over these proposed changes, but about a week ago there was a comment on the DS UK list that prompted me to write something down.

As I understand it there is a huge national review of heart services being undertaken at the moment. I'm sure Penny will give you a better idea of what is happening. I believe it's about improvement, and giving all children an equal chance of survival and a good outcome, no matter where they live.

So as the bulk of it was already written, I figured I might as well post it here on my blog too. Hopefully it may clarify the situation for some people, at least as far as my position on the changes and why I have not accepted invitations to sign up to campaigns to save individuals units. I must stress that these are my personal opinions, but I do not feel it is inappropriate for me as Director of Down's Heart Group to express them here as they are based on a national perspective after over 20 years working and liaising with all of the UK units and not reflective of my own brief personal experiences at one individual unit in 1989. I have met very many of the medical staff who may be affected by these changes and heard firsthand accounts from parents about probably all of them - they are definitely amongst the most gifted and dedicated cardiac teams in the world and we need to take steps to ensure that the UK retains that expertise. (only a few days ago one of our surgeons was mentioned in an Olivier Awards acceptance speech).

And I'd like to thank the surgeon who kept my baby daughter alive: Choreographer tells the harrowing story behind his awards acceptance speech

Getting back to 'Safe and Sustainable', I think I have a pretty good understanding of what this is all about, having been involved in much of the consultation process that has been going on (for far too long now) and attended all the general meetings. What you have to remember is this is not something that happened overnight, originally it all started about 10 years ago and the whole point is not a cost cutting exercise as it has been referred to. It is not actually something that has been government led, it came out of some of the parent groups asking why a few of the recommendations that came out of the 'Bristol Inquiry' had still not been addressed, particularly in relation to ensuring the best clinical outcomes for children undergoing heart surgery.

One of the facts that had been established from research was that there is a correlation between the success rates (both mortality and morbidity) and the number of procedures a surgeon in involved in - basically you need to keep practising to keep up your skills. In some units there is not the capacity for an agreed minimum of operations to take place in a year, so these surgeons are not getting the opportunity to fulfil the criteria and maintain their skill levels.

There were also issues around units with only one surgeon and the problems encountered when they were on holiday or off sick as well as training and progression - with a team of 3 or more surgeons in one unit, it is possible to have one very experienced who mentors other colleagues of varying experience and there is a continual progression as the more senior ones retire. There is a real lack of paediatric cardiac surgeons here in the UK and a few of the really excellent ones have recently retired or will soon do so and if things continue the way they are we will be looking for more and more surgeons from overseas.

The consultants and cardiac teams themselves recognise all of this and whilst naturally none of them wants their own unit to close, they have pretty much all been on-board with the rationale behind 'Safe and Sustainable' since the beginning.

So why has it taken so long? Well one of the reasons was the last General Election when non of the politicians wanted to rock the boat in their own constituencies and since then it is because there has been so much work undertaken in consultation and visiting units etc. to find the best way forward. In an ideal world the Commissioners would agree how many units were needed, what facilities they needed and how to distribute them geographically and we would build 6 or 7 brand new hospitals to meet that need. But of course that's not an option, so a great deal of work has gone into looking at all the possible different options and finally coming up with 4 for further consultation. I attended the meeting about a month ago where there was an hour long presentation explaining the whole process that was gone through and there is a document you can view on-line that details it all (but I'll warn you it's about an inch thick).

So to cut to the chase and clarify - some units will stop providing surgery, but they will continue to do everything else they do and there are also plans to increase knowledge locally with designated paediatricians with cardiac specialist training. In making the suggestions they have, they have taken into consideration many things including:

       * number of procedures
       * access to other services as many kids have other medical
         issues too
       * retrieval times for sick kids
       * national specialist services such as transplantation and ECMO
         and whether these could be relocated
       * population density

and many more. Whilst we would all like to have a specialist centre on our doorstep and being close to home is desirable during such a traumatic event as your child having heart surgery, there are many parents, who for varying reasons, have travelled the length of the country for their child's operation. Some defects are so rare that only one or two units have experience of repairing them, that some families already have no option - if your child needs a transplant they currently go to the Freeman in Newcastle or Great Ormond Street in London. Cardiac surgery on congenital defects is quite different to that in older patients with acquired issues and then you have to add the size of the heart into the equation and the specialist intensive care required afterwards and it becomes obvious that this is not a procedure that can be done in all local units, so depending on where you live you may already have to travel some distance to a cardiac centre.

I don't doubt that these changes will sadly result in some children dying who might otherwise have survived if their local unit had remained, but I believe that we have to weight against this not only the number of children that will survive who wouldn't without these changes, but also the quality of life of those who survive, because it's a harsh fact that whilst some kids survive as a result of surgery, during the process they sustain neurological damage.

The whole idea of 'Safe and Sustainable' is to build on the fantastic service that we already have, but to look to the future and how we can ensure that the service not only survives for future generations but also improves. We have to take what was learnt from the Bristol and Brompton Inquiries, recent issues surrounding Oxford and do everything that we can to ensure that these mistakes cannot happen again - we cannot be complacent and say "it's working well so leave it alone", we have to be constantly looking to develop and improve in-line with the progress constantly happening in the field of congenital heart disease.

Well that's me off my soapbox - I hope that perhaps it helps explain a little more to some parents.   Yes a move will be disruptive I know and you have an affiliation with your unit and it's staff (I fully appreciate that - I feel the same about the cardiologist and surgeon that treated my son), but if you can step back and take a more national perspective, hopefully you will see the rationale behind these changes.

if you want to read more check out

Safe and Sustainable website

Children's Heart Federation website

Central Cardiac Audit Database

March 21st - World Down Syndrome Day

2011-03-20T20:29:00.000Z

Well it's been so long since I managed to post. Life has been busy especially getting to grips with my mum's dementia and her having to into a home, but I also fitted in another trip to Nigeria and a few other things, including meetings regarding Safe and Sustainable, the proposed changes to Children's Congenital Cardiac Services in the UK which I really should post about soon.

Anyway, hopefully things will settle down a little soon and I can pay more attention to my blogging, but in the meantime I cannot let such a special event as World Down Syndrome Daye pass without at least making a brief post in recognition of all the wonderful individuals with Down's Syndrome that have touched my life over the past 21 years and of course their wonderful families and carers. To celebrate the wonderful enrichment they bring to our world, I put together a photo montage that I hope you will enjoy and share.

To coincide with World Down Syndrome Day, I would also like to announce the official launch of Down Syndrome Nigeria Support the new UK charity that I am involved with whose aim is to raise awaress of the situation for children and young people with Down's Syndrome in Nigeria and to raise much needed funds to support the work of the Down Syndrome Foundation Nigeria.

Daniel's 21st Angel Anniversary

2010-11-14T20:53:00.000Z

Yesterday, as well as being the Down's Heart Group's Conference and Dinner / Disco it was Daniel's 21st angel anniversary.

During the day, one of our patrons, Sarah Boston, was filming to make a documentary DHG can use and between the conference and dinner we went to my hotel room for a quiet spot where they could shoot a session with the Groups founder, Linda Walsh and one with me. Whilst we were all together we agreed that November is a crappy month as the 20th is Sarah's son, Will's angel anniversary and 21st is Linda's daughter, Katie's angel anniversary.

Our shared experience gave me strength for the presentation I had to do later in the evening, when I showed the photo montage I made in August in Daniel's memory and said a few words. It was incredibly hard emotionally, especially after a few other things that happened this week, but somehow I managed to just about keep it together without becoming a blubbering wreck.

Later I was dragged outside by my husband as one of my friends had given him a Chinese sky lantern for us to launch for Daniel. My youngest son lit and launched it and we stood as a family watching it get further and further away, the light getting smaller and smaller before it finally went out. Then we went back inside and there was a bottle of pink fizz for us to toast Daniel - it was really lovely.

Sarah Boston had stood at a distance watching and when she came back in the hotel, we hugged each other and thought of Linda who had gone by then. We said how lucky we are to have our special angels in our lives, even for such a short time.

Spending the day with friends and so many people with Down's Syndrome was a truly wonderful way of remembering my angel. The main part of the day was incredibly busy and the trend of the week for things not to run smoothly continued right up to the end, but with considerable assistance from a few friends and family, I think we managed to just about pull it off. Whilst it was emotional, I got through the presentation and then we had fun with the youngsters boogieing the night away.

No photos yet as my camera died (I said things went wrong), but I'll try and add some when I get them sent by friends.

The day after D Day

2010-08-04T10:03:00.002+01:00

Well I made it through D day and although there were inevitably a few tears, actually it was the best birthday I've had in the past 20 years, thanks to so many wonderful friends.

So many people took the time to send me Birthday Wishes and messages of support. My Facebook page was busy all day with posts from friends worldwide, many of whom I only know through online networks, but I felt surrounded by the love and support of so many people, that even without the pink hair it would have been an awesome day.

I want to say THANK YOU to everyone who has got involved in the Daniel Green Memorial Celebration, whether it be by donating or sharing his story, I hope that the ripple effect will have meant it reached beyond my circle of DS friends and has enlightened others as to the inner beauty of individuals with Down's Syndrome.

If it has changed just one persons thinking then it has been worth it and I cannot ask for a better tribute to my son than that.

I also need to say a special thanks to Beeunique for donating the hair dye and Novel T's for doing a great job on my polo-shirts and with free postage.

The celebration (and my pink hair) carries on until Daniel's angel anniversary on November 13th when I will no doubt be providing the entertainment at the Down's Heart Group conference. So it's not too late to make your donation if you haven't had time before, just visit my Everyclick page or send a cheque (payable to Down's Heart Group )to the address on the website.

Who am I?

2010-08-03T06:58:00.008+01:00

No poetry writing last night which is the usual thing for Daniel's birthday and angel anniversary, but I did spend time thinking about who I am after 50 years of being.

Who am I?

I am a wife of nearly 30 years to the wonderful man I've loved since our first kiss
I am mum to 4 beautiful children - three whom I've watched grow up into caring individuals who are always ready to speak out for people with learning disabilities and 1 who in 100 days changed my world
I am someone who hates all the inequality and hurt in our society who cannot understand how people can bear to deliberately inflict pain on others and often in the name of religion
I am someone who wants to change the world, make people realise how blessed their lives are, how rich they are even with no money and how easy it is to share with others even if you think you have nothing, because we all have knowledge and love to give one another
I am someone who realises that I am just a minute part in the scheme of things, so I have chosen to try and make a small difference in the lives of people I feel passionately about - people with Down's Syndrome

Today I mark 50 years of being and celebrate the life of my son Daniel who was born 21 years ago on this my birthday. His short life taught me many lessons: the hardest lesson of all - the loss of your child and the most important lesson, that of unconditional love.

I can't change the world alone, but if our story has touched your heart in some way, perhaps you can share it with others and in that way what started as a small ripple may grow into a wave and we can all be a part of changing lives for people with Down's Syndrome worldwide.

Dedication

For all my friends worldwide (most whom I've never met) who have the joy of sharing their lives with someone who has Down's Syndrome, for all my friends with Down's Syndrome who never cease to be a source of inspiration to me and for everyone who works tirelessly to improve the lives of people with Down's Syndrome everywhere.

Postscript
In light of the events of today, I think I need to add I am the nutcase who just dyed her hair pink to celebrate the life of her son and raise funds for Down's Heart Group!

See more photos on Facebook.

If you'd like to donate you can do it here.

D day is in less than 4 hours

2010-08-02T20:39:00.000+01:00

As D day approaches, whether I think of it as D for Daniel or 'dying my hair pink', either way I can't help but think back to this day 21 years ago and reflect on how the events that were to follow over the next 101 days would change my life.

On Wednesday August 2nd 1989, I went to bed, placing the birthday cards that had already arrived on the bedside table ready to open them the next morning whilst cuddled up with my 15 month old son Andrew. I was 36 weeks pregnant and had no idea that by 8am the next morning our new baby would have entered the world, nor the sudden unexpected impact his birth would have on our family.

Despite Daniel being face up, my labour lasted less that 5 hours during which I was opening my birthday cards, much to the amusement of the midwife. Attention quickly turned to me as I had a retained placenta necessitating a trip to the operating room and it was whilst I was anaesthetised and Malcolm had gone home to collect Andrew from our friend, that concerns were raised about Daniel. So it was 6 hours later before I was awake and Malcolm had come back to the hospital before they could tell us that our baby had Down's Syndrome. My first proper cuddle was in the Special Care Baby Unit with a drip in my hand and a baby attached to lots of monitors.

Three days later we were having an emergency christening whilst waiting for an ambulance to Great Ormond Street Hospital where Daniel was confirmed as having Hirschsprungs Disease requiring colostomy surgery the next day. He returned to our local hospital a few weeks later, where our frequent visits meant that we were soon friends with all the staff on the ward and Andrew knew where the toy box was located. He also knew where Daniel's shawl was kept and would often race down the corridor to Daniel's room and have it out ready for cuddles by the time we got to the door.

At 10 weeks Daniel went back to Great Ormond Street for temporary heart surgery as he was struggling to put on any weight, but when he got there he picked up a bug and they had to delay for a few days, so he finally had surgery on October 10th. When we saw him afterwards in Intensive Care he was covered in tubes and wires and you couldn't see his face because of the ventilator, but it didn't matter to me as I was so relieved because I had been convinced that he wouldn't come out of surgery.

When he was 12 weeks and 2 days old he finally regained his birth weight which seemed a major turning point and in early November he returned to our local hospital, where we resumed our daily routine of visits. I finally began to believe that one day, probably months ahead, our little boy would be coming home with us and I guess I let down the protective guard that had been holding me back from bonding fully with my son.

How cruel and ironic then that we should get that dreaded phone call just days later telling us that we needed to go to the hospital and then when we arrived the words I shall never forget telling us that our little boy was gone. It was the worse thing that I have ever or ever hope to experience. Suddenly we were faced with organising a funeral for the first time and as things turned out it was to be on the Monday following my nieces Christening, where I was to be a godparent - how much harder could it have been?

Anyway, it's all a long time ago although it's still as fresh in my mind, so I decided that this birthday would be a celebration, both of my 50th and Daniel's 21st with a focus on all the positive things that having Daniel has brought to my life. And there have been so many - the opportunity to try and help other families, meeting some truly inspiring individuals. making some wonderful friends (both in person, online and by phone), media coverage and the opportunity to travel to several countries including Singapore, Canada and Nigeria.

It has been a wonderful privilege to be involved in the world of Down's Syndrome and included despite the loss of my son and I want to thank all those families who have allowed me to share in their lives in so many differetn ways. Reaching my half century is a wake up call to get a move on with all the things that I want to do for this special community, I hope that I have the health and strength to contribute a lot more before I'm done!

As many of my friends will know, I had agreed to dye my hair bright pink if I could raise £1000 in sponsorship to go to Down's Heart Group. The way it has worked out I am having it done on my birthday tomorrow and I will keep it that colour for 100 days to mark the time that Daniel was here with us. THANK YOU to all the wonderful people who have already put their hands in their pockets to support me, if you would like to add to my total, please visit my fundraising page, Daniel Green Memorial Celebration.

As August arrives ...

2010-08-02T06:38:00.002+01:00

It's been quite a while since I got chance to blog, partly due to a bout of illness, but mainly due to workload and an increase in the amount of time caring for my mum is requiring daily. However, as August is such an important month in our family calender I really need to try and get some entries made in the next few weeks.

I was always a big kid as far birthdays went until I had Daniel, but since then not unsurprisingly I've found the day rather difficult to cope with as it brings back such vivid memories. Over the years this has also had an effect on my wonderful daughter as four years after Daniel was born, she had the bad timing to be born seven weeks early, thus arriving the day before his and my birthday. That's kind of made it hard to get in the spirit of things for her day even though I try.

So today I would like to just take a few lines to say how lucky I am to have such a wonderful daughter as I'm sure she doesn't realise just how much she means to me. She's intelligent, caring and an incredible advocate for people with learning disability. She's also very strong willed and single minded in many things and I guess we are very much alike in many ways, which in itself causes some of the tensions between us, but I suppose that's inevitable.

These are all things that make her the person she is and I am incredibly proud and think the world of her. It's not that I didn't want my boys, but I did always hope to have a girl and coming along after her three brothers and as somewhat of an accident, she really did make our family complete and I know (although they would be loathe to admit it) that her big brothers Andrew and Michael adore her and I'm sure Daniel would echo that sentiment too.

August 2nd is your day Sarah Jayne and I want to say Happy 17th, you'll always be my baby girl and I think the world of you. Happy Birthday!

I should also say a Happy Birthday to niece Julie on the 4th and niece and god-daughter Emma on the 5th (I said August was a big month for our family). Emma will be 21 this year and that's a little difficult for me too as it reminds me every year of what Daniel should be up to, but she's a great girl and I am honoured to have been the first family member to see and hold her after her mum and dad as she was born in the same hospital as Daniel so I was on hand to get in an early visit. Happy 21st Emma!

Down's Syndrome Association 40th anniversary

2010-03-22T19:58:00.000Z

Well last week was a busy week with events for the UK Down's Syndrome Awareness week and of course World Down Syndrome Day on Sunday, Even then we still have the launch of the new Down Syndrome International website to come tomorrow, so it will take a few days to get everything posted.

I'll start with last Friday evening, March 19th when the Down's Syndrome Association (DSA) held a reception at The House of Lords to celebrate their 40th anniversary.

Lord Dear welcoming everyone

It was a great opportunity to see friends old and new and recognise the Association's achievements, for although Down's Heart Group (DHG) is a seperate organisation, naturally we have many members in common and in fact DHG actually grew out of parent contact that originated after a letter from our Founder was printed in the DSA newsletter.

It was a lovely evening and a wonderful opportunity for my friend Chuks Etuka from Nigeria to meet representatives of other Down's Syndrome groups as well as individuals. Chuks was particularly eager to be introduced to Sujeet Desai, following my mention of him and his fantastic achievements during my presentation in Lagos last year. I think Chuks was very inspired by Suj and he hasn't even heard him play yet!

The Desai family, Chuks and I

Celebrating World Down Syndrome Day

2010-03-16T21:00:00.001Z

My apologies, I've been very remiss with my blog. I've been so busy that I just haven't had time to sit down and write sensibly even though I have got some people I want to introduce you to, but that will have to wait until another day as this is all about Down's Syndrome Awareness Week and World Down Syndrome Day.

Several of my friends are posting 21 things they love about their child with Down’s Syndrome on their Facebook profiles to mark World Down Syndrome Day on March 21^st. I thought that was a really great idea and started to put together my own list on the lines of 21 things that had happened to me as a result of having Daniel.

Obviously in his 14½ weeks of life we didn’t even begin to stack up laughs and smiles etc. but I wanted to post 21 important and positive things and that’s where I got stuck. If I include things like experiencing him going through heart surgery and his death I can probably get there, but I don’t see those as important in their effect on me other than perhaps being able to use that experience to help others.

Those are some of the sad facts surrounding Daniel’s legacy, but overall I see his birth as a very positive life changing event for me and in celebrating World Down Syndrome Day I want to focus on what the short time we spent together has given me.

So then I thought that perhaps I could expand some of the things I had jotted down, for instance I noted that I had met many inspiring individuals with Down’s Syndrome, perhaps I could mention them by name. But where would I begin? And even harder, where would I finish and it would certainly be a list of much longer than 21 names.

And if that list was going to be too long, the list of the friends I have made, both personal an professional would also be too long and how could I quantify it anyway as there are many people that I have never actually met but consider to be my friends.

I could perhaps look at the places I’ve travelled as part of my journey, including Singapore, Nigeria and Canada, but what about here at home in the UK? Oops the list just got too long again.

Finally I have come to the conclusion that perhaps instead of 21 things to represent the chromosome, I should list 3 things to represent the triplication of that chromosome. So here they are, the 3 most important things I learnt from having Daniel:

The understanding that everyone has a value and purpose in life, if we just open our hearts and look beyond the labels society attaches to people to see it.
Even seemingly small and insignificant acts can have an effect on others, so even when you feel helpless in a situation, just the simple touch of a hand may bring untold comfort to a friend.
Unconditional love brings not only acceptance but also allows you to acknowledge your inner weaknesses and doubts and removes the guilt you have for ever having faltered.

So to everyone whose life has ever been touched by someone with Down’s Syndrome, I congratulate you on having experienced such a joy and would like to ask you to join our global community in celebrating World Down Syndrome Day on March 21^st.

Daniel Green Memorial Celebration

2010-01-20T10:02:00.002Z

Sorry I've not posted for a few days, been a bit busy with hubby's birthday, bad weather and launching the Daniel Green Memorial Celebration which is my own personal campaign for 2010.

So why now and what's it for?

Well for those who don't already know, back in August 1989 on my 29th Birthday, I received a slightly unexpected present. My second baby was born a month early complete with an extra chromosome 21, heart and bowel defects (if you want you can read more about it here and here). Despite the best efforts of the wonderful team at Great Ormond Street, in particular Dr Phil Rees and Prof Martin Elliott, Daniel was only to be with us 14½ short weeks before getting his angel wings never having made it home from hospital.

As you can appreciate, losing a child is never easy, but when you share a birthday every year that day serves to re-inforce your loss. To be perfectly honest I went from being a big kid who loved her birthday (to give you an idea, my birthday cards were by my bed for the morning and when I went into labour I took them to the hospital and was opening them in between contractions!) to someone who would have preferred to crawl into a hole for the day and ignore it. However, there were other things that conspired to make that impossible:

My husbands eldest niece was 18 the day after Daniel was born
My husbands sister gave birth to a baby girl 2 days after Daniel was born (already being at the hospital I was the first famiy member after her parents to see her - it was extremely emotional!)
4 years later, my daughter was born 7 weeks early, arriving the day before my birthday.

So ignoring my birthday has never really worked and over the years I've learnt to cope with it, which meant I was caught completely off guard in 1997 for Daniel's 18th. As August approached I started looking for a present for my niece, but no matter how hard I tried I just found it too emotional In the end we gave her an envelope of cash and even then I was in tears as I handed it over trying to apologise and explain that it was because I just couldn't handle it.

Well that experience made me realise that 2010 was going to be a hurdle for me! As much as I might want to keep it low key, I will be 50 so folks aren't going to let me forget that and to many the significance in relation to Daniel being 21 will not be obvious. So I decided if I can't run and hide, then I am going to try and make it a celebration of Daniel's short life and the incredible gift that has been to our family - and so the Daniel Green Memorial Celebration was born.

My intention is primarily to raise awareness and secondly some funds for Down's Heart Group by spending time with some of the children and young people in the UK who have Down's Syndrome and heart problems. I want to see what their lives are like and what it might have been like to share those things with Daniel if he had lived (much like Down's Heart Group patron Sarah Boston did in her book Too Deep for Tears: Eighteen Years After the Death of Will, My Son and in a tv programme Everyman many years ago). So I am now looking for young people who are willing to share some time at school, at play, at work or anything else they enjoy.

I've already had a great response and it looks as if I will be spending time in various schools and playgroups, at hydrotherapy, working in a cafe staffed by individuals with special needs, enjoying the botanic gardens and feeding the ducks, oh and being put on horseback by a special olympics medal winner! And on top of that I am hoping to get to meet a load of my online friends and their special kids - it's going to be great fun!

Then to finish it all off, Down's Heart Group are holding their bi-annual conference on November 13th and 14th at Wokefield Park, Reading and the Saturday night dinner and disco will be the finale to the campaign, which is very appropriate as it is the anniversary of Daniel getting his angel wings. I am hoping that many friends, both old and new, that I have met along this wonderful journey wil be able to join us at the Dinner and make a very special end to this celebration of my sons life.

I'm bound to be posting more on here as plans progress and of course photos from my adventures, but if you would like to know more or to get involved, please do get in touch:

email me here
contact me via Down's Heart Group's website
visit the Daniel Green Memorial Celebration on Facebook and request to join

PS. Apologies to my friends overseas, I know lots of you want to get involved and I'd love to make this a worldwide campaign but I don't have the funds available and I suspect Down's Heart Group wouldn't grant me that much leave! Instead, how about we plan some kind of worldwide thing to do on August 3rd or November 13th?

To terminate or not?

2010-01-10T15:34:00.001Z

Well I'm guessing this could be the post that evokes the most responses so far, because wherever people sit on this question, they tend to feel very strongly and passionately about it and I've found that it can evoke very strong one-sided responses even from some of the most open-minded people - but here goes anyway.

Yesterday in the Guardian there was an article entitled To us, she was Emily about a couple who chose termination after tests showed their baby had Down's syndrome and how that decision gradually tore their family apart. It was a very honest piece from a viewpoint not often represented and for me it reinforced some of the concerns that I have over this issue.

In my work with Down's Heart Group I have spoken to many families facing this difficult decision and as a representative of the charity I am expected to be factual and non-judgemental and not to allow my own personal feelings to enter into the conversation. I hope that after all these years I have perfected this, so I am not going to behave any differently here on my blog. I'm not going to point out all the positive sides to having someone with Down's Syndrome in your life as reading through some of my previous posts should provide that information for anyone that needs it. What I am going to do is discuss some of my concerns over the way some families are arriving at the decision to terminate.

First and foremost I believe that this is a very personal decision and one that should be made based on individual circumstances. People have different moral and religious beliefs, come from different cultural backgrounds, have differing family set-ups and varying degrees of support available to them, so naturally the decisions they make will vary, so I find it somewhat concerning that such a high percentage all choose the same option, which makes me wonder on what they are basing that decision?

This needs to be a FULLY INFORMED decision, taking into account all the factors I mentioned before and realistic unbiased information about Down's Syndrome. This information needs to be made readily available and to be based on pure fact with no implied expectation of the route the family will choose to take and it should include help in meeting families who have a child with Down's Syndrome, support group contacts and also offer alternative choices such as adoption.

Sadly, in my experience this is all too often not the case. Termination is the expected outcome; the possible medical problems of the baby are given high precedence; adoption is never mentioned even when a family is obviously in turmoil over the decision; focus is given to the child's lack of future potential even though as with any baby there is no way of knowing what that will be; the option of "throw this one away and have another go" is readily offered.

Generally, termination seems to be offered as an easy way out and that worries me greatly. It worries me because I know of families who have gone down that route, steered along by the medical experts and then been left to pick up the pieces when they slater tart questioning whether they made the right choice. Families who have been unable to conceive again and ended up childless and one family who terminated, refused testing in the next pregnancy as they didn't want to face all the pressure again and went on to have their second child with Down's Syndrome. They were devastated, not by that baby having Down's Syndrome but by guilt over what they had done before.

I'm certain that many parents who opt for abortion are left with very raw emotions from their experience (yes some of you may feel that they deserve to, but I would ask did they really know and understand that that might happen?) and I wonder what the long term effect on their mental health may be?

I am sure that not all of them walk away unscathed and never look back. I can't count how many times the family of a young child has told me that suddenly there are loads of people with Down's Syndrome in their area, but of course really those people were always there it's just that now these families are far more aware and tuned into the characteristics so they notice them. I suspect that for many of those parents who have a termination it is much the same and that everywhere they go they see people with Down's Syndrome who are a constant reminder of the choice they made and I guess that's not always an easy thing to live with.

In October 2009 the British Medical Journal published a reseach paper Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: analysis of data from the National Down Syndrome Cytogenetic Register. One of its conclusions is "These future changes need to be closely monitored toensure that appropriate resources are available both for thepotentially increasing numbers of therapeutic abortions andalso for the babies who will still be born with Down’ssyndrome." Whilst we are worrying about the cost of future medical and educational requirements, I'd like to suggest that some research be done on the psychological costs for the families who later regret following the advice of the experts at a time when they were too vulnerable to demand adequate information to make a fully informed choice for the future.

Families given a diagnosis of Down’s Syndrome, whether before or after the baby’s birth are incredibly vulnerable, the onus should be on ALL medical professionals to ensure that they receive up to date, accurate, realistic and unbiased information so that they are in a position to make INFORMED CHOICES. Thankfully some medics are excellent at this, but I fear that they are still outnumbered by the others.

On the 12th day of Christmas I'd like to introduce ...

2010-01-06T00:01:00.191Z

actually now I'd like your help!

Over the past 11 days I have introduced you to a few individuals with Down's Syndrome who in one way or another have been an inspiration to others.

Some that have achieved great things themselves and some that have inspired others to great things.

But if we are honest, having a child with special needs can be difficult, frustrating and tiring and that is all that a lot of people on the outside see, so we need to tell them about the other side, the wonderful positive gifts that sharing the life of someone with Down's Syndrome brings you.

During Daniel's short life I was inevitably so tied up with his medical issues that I didn't get chance to realise that important fact and when he died the grief was too intense to see beyond it for a long while. I felt terrible guilt - guilt that somehow it was my fault he had these problems, guilt that I hadn't been able to save him and guilt that I had never really accepted him and loved him for who he was because I hadn't really had chance to come to terms with the Down's Syndrome.

It was some way down the line that I finally realised that it was just the medical problems that had clouded my view. That a mum who: visits twice a day; takes clean clothes and dresses their baby; puts him in pj's every night and sets his mobile going before leaving; expresses milk for 6 weeks with only a photo and a recording of her baby crying because she's not allowed to feed him direct because he's too weak - that's not a mum who doesn't love her baby! Somewhere during those 14½ weeks of his life, everything else had stopped mattering, he was my baby and I loved him unconditionally, I'd just been too busy doing it to notice!

Only finally then was I able to see clearly what a truly special gift Daniel was in my life and what richness people with Down's Syndrome bring to the world.

I know there are many more individuals, like those I have featured, so now it's time for you to tell me about the person with Down's Syndrome that inspires you the most and why. Post a comment saying :

who they are
how you know them
how they have inspired you

It doesn't have to be something very public and obvious like those I have focused on, it can be something small and personal such as the effect my son Daniel had on my life.

Who knows, maybe I can feature them on my blog some time in 2010.

On the 11th day of Christmas I'd like to introduce ...

2010-01-05T00:01:00.208Z

the pupils of the school of Down Syndrome Association of Nigeria

Over the past 10 days I've introduced you to people with Down's Syndrome that inspire me for varying reasons, so after my trip to Nigeria last year I had to include these young people. They have inspired me to try and raise awareness of the work the Down Syndrome Association of Nigeria (DSAN) is doing to improve the lives of children and young people.

Having seen firsthand the situation in their country, the total lack of provision for health and educational needs makes me realise that whilst we still have much to strive for in countries such as the UK and US, we have made incredible advances for our young people and have much to be grateful for and proud of.

There is never room for complacency, but whilst we continue to work towards improvements for our own youngsters, we can also use our valuable experience to help those who have a greater need for change, in this way we can help and support them to make advances much sooner.

The young lady in this photo is the inspiration behind DSAN, her mother, Rose Mordi started the Association and works tirelessly as it's President, trying to raise awareness and provide families with positive and realistic expectations for their children.

This is not an easy task in a country that is seriously under resourced in every way and where knowledge and understanding of Down's Syndrome is very limited, so much so that the birth of child with any form of handicap is seen by many as the result of some kind of curse being placed on the family. The lack of ante-natal and post-natal care can mean that diagnosis is not made until a baby is at least 4 months old, then of course there is no routine screening for medical issues, so the prognosis for many babies is not good.

Given this background it is easy to understand why the DSAN are proud of their achievements and of the fact that they have a resource centre where they run a school for some of the youngsters. But I have to tell you that this centre is probably very far from what you imagine - 3 basic rooms, a small courtyard, a small kitchen and one (non-flushing) toilet accessed straight from the classroom. And because of the distance some of the pupils travel and the lack of transport, many of them stay at the centre overnight during the week, using mattresses that are placed on the classroom floor.

Given all that is against them though, just look at these beautiful young people. They are beautiful, happy, loving, caring individuals and against all the odds they are achieving and showing their community that they have a valuable part to play.

Please do anything you can to help the work of DSAN, at the very least join their Facebook group to show your support for the hard job they have ahead of them. They don't have what we would consider basic health or social care and state education makes no provision for special needs, yet these young people are always clean and well cared for and THEY ARE achieving! How much more could they do with better provision?

Despite all the negative publicity you may have heard about Nigeria, the people I met were friendly, caring individuals who know there is a lot of work to be done in their country, but they are trying to make a start for some of their most vulnerable citizens and provide them with the opportunity to show just what can be achieved given the opportunity.

Please watch my photo montage from my trip.

On the 10th day of Christmas I'd like to introduce ...

2010-01-04T00:01:00.094Z

Brad Hennefer

20 year old Brad was the first individual with Down Syndrome to graduate from his High School in Cherry Hill, New Jersey. He enjoys listening to music, watching movies, hanging out with his many friends and playing sports. He has taken part in Special Olympics basketball, golf and weight lifting, winning several gold and silver medals and he was also a member of his high school varsity basketball and golf teams.

In October 2008 the New Jersey State Senate honoured Cherry Hill East’s Varsity basketball team in recognition for it's inclusion of Brad, but by all accounts, Brad was not only a greatly liked member of the team but also a valued player. You can see him in action here.

Brad started playing golf at the age of 3 when his older brother would take him to play miniature golf, but as he got older, his family noticed that he had quite a talent for the sport. Through the Variety Club of Philadelphia, Brad was partnered to play in a few tournaments around the area with player Rich Smith who quickly noticed Brad's talent and began working with him to develop his game.

Brad is now able to play a full 18 holes of golf (you can see his progress here) and knowing how much golf had helped Brad, he, his family and that of his golf partner wanted to give other people with DS the same opportunities, so they set up Golf for Life which is becoming a successful program, both in the Philadelphia area and across the US.

"I play golf because it's fun, and I can spend time with my father, and my brother, and my friends. It's good exercise, and, really, because it's fun!"
-Brad Hennefer, age 20

It also appears that Brad has some pretty smooth dance moves - check them out here!

On the 9th day of Christmas I'd like to introduce ...

2010-01-03T00:01:00.317Z

Andrew Banar

Andrew is an 18 year old drumming enthusiast who decided that he wanted to continue his education after he finished high school but that cost money, so he decided that he needed to get a job to finance it.

He started off selling lemonade, but then his mum had an idea after seeing Andrew draw a simplified drummer wearing a faux-hawk hairdo, just like his idol Tré Cool in American rock band Green Day. She wondered if the could sell t-shirts with Andrew's logo on and Andrew's website Group Hug Apparel was born.

Since then Andrew's product range has increased to include women’s styles as well as cloth tote bags and aprons with the intention to add more of Andrew’s original designs in the future.

Worldwide sales have been made through the website, but Andrew is happiest when he is making personal sales and he if often to be found at events selling direct and taking the opportunity to meet people personally. Not only do his products raise awareness but he donates $2 from every sale to various charitable causes.

So have you got your's yet? I was wearing mine at the World Congress in Dublin! Check out the product range here.

On the 8th day of Christmas I'd like to introduce ...

2010-01-02T00:01:00.130Z

the late Deanna Sipaco

Another inspiring individual who was sadly born with a heart defect at a time before corrective surgery was widely available with positive outcomes.

Deanna, a talented artist, (pictured here with Sue Buckley from DownsEd) died in September 2005 at the age of 33, leaving behind her not only her artwork but also a legacy in the form of the DS (Deanna Sipaco) Foundation for the Differently Abled.

This non-profit organisation started by her parents on Deanna's 29th birthday, continues to cater for the social and self-actualisation needs of people with special needs. Deanna started painting at the age of 9 and the Foundation Centre now displays a number of her paintings that look like a kaleidoscopic blast of flowers in vibrant colors, as well as paintings and doodles of children with Down’s Syndrome.

During her lifetime, Deanna was also invited to various national and international events including the World Down Syndrome Congress in Singapore in 2004 where I was lucky enough to meet and chat with her. Her art was colourful and vibrant and Deanna was very enthusiastic about it, but sadly her underlying heart condition was very obvious and it was to be this that resulted in her early death.

You can see a video of more of her artwork here.

At the World Congress in 2009, Down Syndrome International acknowledged Deanna's contribution to people with Down Syndrome in the Philippines and the rest of the world by presenting an award which was accepted on Deanna's behalf by her parents, Diana and Alberto Sipaco.

“Receiving the award on behalf of our daughter brought us a sense of gain. It’s heartwarming that even if she is no longer with us, the world continues to recognize her for what she was and what she brought to other children with the same circumstance as she had.” her mother said.

On the 7th day of Christmas I'd like to introduce ...

2010-01-01T00:01:00.180Z

the late Judith Scott

Although a sad story, I think this highlights how things have progressed for people with Down's Syndrome and as such I wanted to share it with you and thought it deserved a place here. I also think that ultimately it had a happy ending which makes it worth reading.

Judith and twin sister Joyce were born on May 1st 1943 and for their first 7½ years they were virtually inseparable, Then it was time for school and their parents were told that Judith was ineducable and recommended to place her in an institution. Joyce awoke one morning to find the bed they shared was empty and the next time she saw Judith was in the institution.

At the institution following oral testing, Judith was assessed as having an IQ of only 30 and was therefore not offered any training. Without Joyce, her childhood interpreter, she became severely alienated and developed behavioral issues but it was to be years before she was diagnosed as severely deaf explaining her communication problems. Although the twins saw each other a few more times, eventually they lost contact.

In 1985, Joyce realised that by becoming her sisters legal guardian they could once again be close and after a struggle to locate her, Judith finally moved to California where she started going to the Creative Growth Art Center. At first she was fairly uninterested in paint but a few months later she attended a fiber art class and suddenly a whole new world of expression opened up for Judith. She was given complete freedom to choose her own materials and taking objects she would wrap them in carefully selected colored yarns to create diverse sculptures in many different shapes. Many of her works also feature pairs indicating that her experience as a twin played an important part in her life.

Judith died peacefully in her sister’s arms at the age of 61, having outlived her life expectancy at birth by almost fifty years.

Having already corresponded briefly with Joyce, I was excited to unexpectedly meet her at the World Congress in Dublin and to have the opportunity to view Outsider a film about Judith's life and work. It was incredibly emotional to see her and Joyce together and the wonderful connection between them and wonderful to know that after the sadness of many years of separation that they were eventually reunited and shared quality time together. You can read more of their incredible story and Judith's work here.

On the 6th day of Christmas I'd like to introduce ...

2009-12-31T00:01:00.098Z

Emmanuel Bishop

Only a few of you may yet have heard of 12 year old Emmanuel, but I suspect that in a few years time his name will be more familiar.

I have been in contact with his dad Victor since Emmanuel was a baby and long ago he asked permission to link from his comprehensive website Riverbend Down Syndrome Parent Support Group, to Down's Heart Group's website for all the cardiac information. However, the first time we actually met in person was at the World Congress in Vancouver in 2006 when I was disappointed to hear that Victor was there on his own.

I was keen to meet Emmanuel too, so I was very excited when I heard that he would be presenting at the the World Congress in Dublin last year. Finally I would get to meet this young man in person. And I was not disappointed, apart from his many talents which I shall mention in a moment, I found Emmanuel to be a very polite, well mannered and charming young man. whom I'm sure with the benefit of a few more years of experience and confidence will be another great self-advocate.

Currently he presents beautifully on familiar subject matter, but is a little less confident when asked to respond to questions from the audience - but then lots of people with more life experience than his 12 years find that pretty daunting too. Added to that is the fact that he is obviously more confident in Spanish than English (yes he speaks both) and you can understand his hesitance when an enthusiastic audience start hurling questions at him in English.

In Dublin, Emmanuel gave a violin recital on the main stage to a packed auditorium and then he gave a powerpoint presentation entitled Before and After which charts his development. The current version has been updated and now includes Dublin, it encompasses his swimming, violin playing and golf - yes golf! Emmanuel has been playing since the age of 8 and is showing a natural talent for the sport, you can read an article about it here, which was published in Down Syndrome Research and Practice.

I look forward to watching Emmanuel's progress in the coming years and have to confess to feeling a little bit proud that I've "known him" almost from the beginning! Thank you Victor for introducing me to your wonderful son, whom I think is a great individual to be my 6th day of Christmas, as like us on the brink of a New Year, I think Emmanuel is on the brink of a wonderful life.

On the 5th day of Christmas I'd like to introduce ...

2009-12-30T00:01:00.120Z

Dylan Kuehl

26 year old Dylan is an artist, owner of his own artistic business, a Special Olympics Gold Medalist, dancer, musician and a performing artist too.

In his own words, Dylan describes what his art means to him:

“I am able to express myself with art. I get focused and detailed. When I do my art I feel emotional and passionate and dedicated. My art work builds confidence and it builds character. Down syndrome doesn’t affect my art work. I just show my expressions of being that unique.”

But Dylan's artistry extends beyond painting, he writes beautifully and with incredible passion.

Sunset
By Dylan Kuehl

I like wearing flashy colored clothes
so I blend with the sunset
The color of my clothes helps me find peace inside
It also means I’m part of the sunset
When I’m meditating
it feels like the colors of the sunset
are flowing thru me
It’s like having a connection of meditation
It makes perfect sense of connection
Sometimes I have anger management
When I look at the picture I feel calm
smelling the sweet air with a cool breeze
What an amazement the sight of a sunset would be
It makes feel like that I’m included to the world

I had the pleasure of meeting Dylan and his family at the World Down Syndrome Congress in Dublin this year. In fact we were in the same accommodation on the university campus, so I got plenty of opportunities to chat with Dylan. He is a very vocal and articulate young man with a wicked sense of humour, a thirst for knowledge and a strong wish for society to see beyond labels and look at people as individuals.

During one of our conversations I asked Dylan to tell me what it is like for him to have Down's Syndrome. He told me that as far as he is concerned it is not a problem, he has a great life and thoroughly enjoys it. I then asked him if he feels he suffers from it as often reported in the media, he said that he does not suffer from having Down's Syndrome only from the attitudes of some people towards him because he is a little different.

See more of Dylan's artwork on his website DK Arts

Dylan adds: “I want to send a message to the parents by telling them to tell their kids not to be afraid to show their abilities. Show the public—the world—what they can do, and most importantly, show the world how important they are. I want them to feel what I’m feeling. It’s time for them to shine, because they are the future generation. My message is simple. It’s about abilities not disabilities.”

On the 4th day of Christmas I'd like to introduce ...

2009-12-29T00:01:00.143Z

Hannah Carty

Seven year old Hannah was born with Down's Syndrome but up until just before her second birthday she was fit and healthy and progressing well. Then she was diagnosed with Leukaemia and underwent intensive chemotherapy which left her with cardiomyopathy, a condition where the heart's function is impaired. In Hannah's case the left side of her heart was enlarged and not beating as powerfully as it should.

It was diagnosed in May and in July Hannah suffered severe heart failure and the only option available was a heart transplant. Thankfully things had changed from previous years and the fact that Hannah had Down's Syndrome was not a factor in the assessment for transplantation so she was placed on the organ waiting list. After waiting four months for a heart, a donor became available but during the night when things were being planned and co-ordinated, Hannah was taken ill and the operation was cancelled. By the end of that day Hannah was in a medically induced coma and on a life support machine (ECMO) which she would need to be on until another donor organ became available.

However, there is a limit to how long someone can be on ECMO and Hannah’s time on it was not good, she suffered a pulmonary hemorrhage, her lungs filled with blood and blood was running down the ventilator tube. The Freeman Hospital where Hannah was being treated was pioneering the use of artificial hearts that operate outside of the body, called Berlin Hearts and her parents were desperate for Hannah to have one so she could have a better quality of life. They wanted to see her awake and also saw this as a way of providing a longer bridge to transplant, because the survival time on a Berlin Heart is much longer than on ECMO.

When Hannah was fitted with the Berlin Heart the operation did not go well, as afterwards they were unable to get her off the heart and lung bypass machine. The surgeons told her parents they believed it would be kinder to let her go, but not prepared to accept that, her parents asked them to keep her on bypass overnight and try again in the morning. The surgeons agreed but said there was no chance of her surviving and that she would die within minutes of the by-pass machine being switched off, however Hannah proved them wrong and held her own and stabilised over the course of the day.

Finally after eight months, Hannah got her donor heart and became only the second child in the UK with Down's Syndrome to have a heart transplant.

On the 3rd day of Christmas I'd like to introduce ...

2009-12-28T00:01:00.008Z

Karen Gaffney

The moment she was born 32 years ago, Karen Gaffney began an incredible journey that continues today.

She is the President of a non-profit organization Karen Gaffney Foundation dedicated to championing the journey to full inclusion in families, schools, the workplace and the community for people with developmental disabilities. She is doing this by creating awareness and calling attention to the tremendous capabilities of people with disabilities, which she accomplishes through presentations and workshops delivered all over the world.

Amongst her many achievements, Karen can list:

Graduating from St. Mary’s Academy in Portland, Oregon
A two-year Associates of Science degree from Portland Community College
Swimming the English Channel as part of a six-person relay team in Summer 2001
Swimming 9-miles across Lake Tahoe in 59-degree water to raise money for the National Down Syndrome Congress in September 2007 video footage of Karen's Tahoe swim
Swimming 5 miles across Boston Harbour during Down Syndrome Awareness Week in October 2009 video footage of Karen's Boston swim

Karen is only 4 feet 9 inches tall and weighs 95 pounds. She walks with a limp and can't use her left leg at all when she swims, but when Karen speaks she puts across a very powerful message that people with Down Syndrome are more alike, rather than different, from everyone else. Karen tackles any challenge she faces with determination and commitment, knowing she has limits, but not allowing them to limit her drive to succeed.

I first heard Karen speak at the World Down Syndrome Congress in Singapore in 2004 and was blown away by her presentation. Later on I was fortunate to get to meet her and her mum and have a great chat with them. Then at the World Congress in Vancouver in 2006 we met again and I had the pleasure of spending an evening with Karen and her parents, which was really nice. She is pictured here with her mum.

Whilst we have only met up twice since then, once when Karen was in London and then in Dublin at the World Congress in 2009, I follow her work with great interest.

She is a fantastic advocate for people with Down's Syndrome and if you ever get the opportunity to hear her speak, I would highly recommend that you take it. Do take the time to check out the links I've included and you will see that Karen truly is an inspiration to us all, not to give up on our dreams because other people think we can't do something.

Most of all, Karen is a truly lovely and gracious person and it is an honour to call her my friend.

A message from Karen

Dear Penny,

Thank you so much for the kind and caring words in your article. That was so nice of you to say that. I have worked very hard to spread my message of being fully included in the regular classroom setting, and also to promote the mission statement here at my non- profit organization, The Karen Gaffney Foundation. My message is in the hearts and the passion of people with developmental disabilities and their families, and I hope they take away my message deep in their hearts to share my story with people all over the world. I swim and talk for awareness, and I work everyday to show what is possible for people with disabilities. Anything is possible if you just put your heart to it.

Thank you so much for working with me to spread this message worldwide. I hope you have a wonderful holiday season.

Love,

Karen Gaffney

On the 2nd day of Christmas I'd like to introduce ...

2009-12-27T00:01:00.141Z

Claire and Nicola Mowberry

Claire and Nicola were about 9 months old the first time I ever saw them. It was at a Down's Heart Group conference and I remember them sitting in their car seats side by side at lunchtime, whilst Richard their dad fed them pieces of bread from his sandwich. They reminded me of two little birds with their mouths open waiting for the next bite - little did anyone know at that time just what a wonderful memory of Claire that would prove to be.

Although I had heard of other twins in Down's Heart Group where both had Down's Syndrome, Claire and Nicola were the first where both twins had survived and I have to admit to having been fascinated by them from my first contact with the family. Whilst both girls were born with heart defects, they were not the same. Nicola had an Atrial Septal Defect (ASD) whilst Claire had Fallot's Tetralogy necessitating her to have her first surgery, a Blalock shunt at 4 months to enable her to live to have corrective surgery later.

At 15 months she had further surgery where they opened her chest and repaired the hole. but there were complications and her parents were told that she might not survive the next 12 hours. During this time she was put on to ECMO and finally 5 days later she started to pull through, but then on her first day home she was re-admitted and it was found her airway had reduced due to being ventilated for so long, so she was given a Tracheostomy.

I remember keeping track of Claire's progress through this and being very concerned, not only for her recovery but for her parents potentially having to go through it all again with Nicola. Thankfully though, Nicola's hole eventually closed on it's own so that was one less worry, although the issue of Claire's Tracheostomy was to continue. The surgery to reverse it is more complicated in a child and it was 5 years before a specialist from Switzerland saw Claire at Great Ormond Street Hospital and was prepared to remove it, although there were no guarantees what damage might have been done to her vocal chords or whether she would ever be able to eat normally.

At the Down's Heart Group conference in 2008, I was overjoyed to actually hear Claire's voice, quite quiet and husky, but none the less, her voice. And then on Sunday morning at breakfast I had the pleasure of sharing a table with the family and not only witnessed Claire eating a small amount of food orally, but also interacting verbally with her twin and older sister. It was a truly wonderful thing to see.

So what makes this family so extraordinary? Well apart from the obvious fact that twins with Down's Syndrome are fairly unusual, it's the family that are amazing. Many people find it hard to cope with having a child with Down's Syndrome and heart problems, others find it hard to cope with twins, but Richard and Shirley have taken it all in their stride and remained the most positive supportive couple I know. Despite all the time taken up in medical appointments and all the other services the twins have required, they have managed to maintain a family life and the fact that the twins big sister Lauren is a wonderful, well adjusted young lady, confirms this. I really feel incredibly privileged to know them and have them all as friends.

Dad Richard says:

My girls are now 15 years old and so much fun to be with. I do not believe we would have coped without the help from Down's Heart Group.

On the 1st day of Christmas I'd like to introduce ...

2009-12-26T00:01:00.109Z

Sujeet Desai

Sujeet (or Suj as he is known) is 28 years old, married, an accomplished musician and is learning to drive. He will also tell you that he has the best teeth in the world as he loves his dentists and sees them often - then when you look amazed he will add that both his parents are dentists!

Amongst his many achievements, Suj can count:

Playing 6 musical inatruments - Violin, Piano, Clarinet , Bass Clarinet, altosax and Drums
Second dan black belt in Tae Kwon Do
Competing in Special Olympics in Alpine Skiing, Swimming and Cross-country training
Numerous presentations as a self-advocate
Setting up his own website

In 2003, Suj married Carrie Bergeron, who also has Down's Syndrome and they now have their own apartment mid way between both sets of parents. In keeping with their cultural backgrounds they had a traditional Hindu wedding ceremony followed by a western ceremony a week later. see more wedding photos here

I've met Suj and his parents on several occasions although I've yet to meet Carrie as she tends not to travel with Suj as she has her own timetable of events also advocating for people with learning disabilities. Suj is a quiet young man who obviously enjoys his music and the pleaure that it gives other people. His musical versatility not only encompasses many instruments but also many differnt genre and I have thoroughly enjoyed the oportunity to listen to his performances.

In 2009, National Down Syndrome Society featured a video of Sujeet Desai, The Traveler as part of their Awareness Week Campaign.

A message from Suj:

I was born with DOWN SYNDROME. Therefore I learn things slowly. I have worked very hard for so many years to learn what I love to do to overcome limitations of my disability. I would like to be a musician but my MISSION is more than that. People say that I have been a role model to young children around the world with disabilities, especially those born with Down syndrome either through my web page or music performances and workshops that I do with my mother to share my story.

I like to make my presentations especially at conference like events more than just an entertainment but educational as well as inspirational. So it can be an upbeat on disability issues and continue to bring hopes to individuals with disabilities, their parents, families, educators and services that work with them.

My goal is continue to work to make my MISSION POSSIBLE ! .

Wishing you inner peace

2009-12-25T00:01:00.091Z

I know from personal experience that not everyone will be full of seasonal cheer today. We are generally aware of this in relation to those in areas of deprivation and conflict, but what about those in our very midst?

For many they will be facing their first Christmas without a loved one and finding the bitter sweet memories of the past difficult to cope with. Others will have loved ones who are ill and unable to share in the festivities in the way that may have been envisaged.

So whatever your own personal or religious interpretation of the day is, please spare a moment to think of those who may be having a hard time physically or emotionally. Let's wish them peace in their hearts and lives and hope that as the New Year approaches they may be comforted by happy memories and find the strength to move forward with their lives.

Personally I always find Christmas is a time when I am conscious that a member of our family is not there to open presents with the rest of us and I recall that he never shared that time with us, which naturally saddens me. Then I look at what I do have, three wonderful children who are rapidly growing up and of whom I can be incredibly proud. They may not remember or never have known their special brother, but all of them are strong advocates for people with disabilities and every one of them has spoken out against discrimination or innaccurate portrayal, even correcting teachers.

How can I be anything but thankful for the gift Daniel gave us all. To quote from a blog I read a month ago:

"Yes, I am thankful for all the wonders associated with down syndrome. Actually, I am more than thankful, I am humbled. Humbled we have this opportunity to be better people."

Here is the link to the blog The Ordinary Life of an Extraordinary Girl

Well that's it folks - wishing you peace and serenity.

Starting tomorrow, my DS version of the Twelve Days of Christmas.

Next Generation Competition

2009-12-21T21:31:00.003Z

Just had to tell you what a fantastic day we had at Woburn for the final of the Next Generation Competition. It was a long day, especially for the kids, but Hannah and Harvey were both fantastic advocates for people with Down's Syndrome.

They were in the same group, the White Pengiuns and first off was a dance session with Flawless.

Here's Hannah posing for a photo with some of the guys from Flawless (who incidentally were great with the kids, but especially our two).

Then it was off to have their photos taken. It was all rather intimidating with lots of noise and things going on around us, but the photographers were very patient. These shots were taken around the professionals, so they did a much better job.

Harvey really didn't want to stand up for his photo, or even kneel down, but he pulled this pose all by himself and I have to say I think it's a winner!

Hannah was also not impressed at the prospect of standing and didn't really want to smile, but a lot of effort from her mum Jo finally got some good shots. I think she looks cute here.

There were supposed to be two winners chosen, but I guess the judges just couldn't decided between so many beautiful children, so in the end they actually chose ten. We were all overjoyed when they were announced and Harvey was one of them. He'll be doing a photo shoot for the Next catalogue in a few weeks time, so watch out for that gorgeous face.

What a brilliant positive message to show just how wonderful our kids are and that there is nothing to be frightened of, they are really just like the rest of us. Thank you Next for this opportunity to promote awareness and thank you to Hannah and Harvey and their families for letting me share this special day with you all.

Check out more photos in my Facebook album

My Christmas Wish for you all

2009-12-20T15:27:00.004Z

Firstly I would like to wish each and everyone reading this, a Christmas full of the knowledge that you are in the hearts of friends from near and far and surrounded by the love of family and friends. I consider myself incredibly blessed to be part of a very special community of people who have experienced the joy of having someone with Down's Syndrome in their life and I know that gives me an invisible bond with so many of you worldwide.

In 2010 I am undertaking an Awareness Campaign to celebrate the life of Daniel, my angel with Down's Syndrome. Having managed to arrive a month early on August 3rd and thus share my birthday, this coming year would have been a double celebration for my 50th and his 21st. Apart from the day of his birth we never actually got to share the day together as he only lived 14½ weeks, so in 2010 I have decided to try and do something positive in his memory.

I will update with more details as plans unfold, but there is an immediate opportunity for you to get involved wherever you are by granting me three Christmas wishes if you haven't already done so:

Please sign up to support the cause page of Down's Heart Group on Facebook
About 47% of babies born with Down's Syndrome have congenital heart defects like my Daniel. Fortunately continual advances in treatment mean that more and more of them are having successful surgery, but it is still a traumatic experience for their families to go through. For the past 20 years I have worked with Down's Heart Group to provide support and information for these parents, please show your support for what we do by joining us.
Support people with Down's Syndrome and heart conditions

Please sign up to World Down Syndrome Day on Facebook.
March 21st was chosen as World Down Syndrome Day as it is the 21st day of the 3rd month representing the 3 chromosomes present in Down Syndrome. On this day people worldwide celebrate Down Syndrome and the joy of having someone in their lives with the condition. Please get involved in any way that you can, be it organising an event or just wearing a badge for the day and let's make the 5th year the biggest and best yet.
Join World Down Syndrome Day

Please show your support for Down Syndrome Association of Nigeria
There are so many worthy causes in the world, but this one is close to my heart after my visit to Nigeria this October and seeing firsthand what the Association is up against in trying to help individuals with Down Syndrome in Nigeria. I have been writing about my trip here on my blog and have more installments to add, but I know that the families and workers in Nigeria really appreciate the comments and interaction from overseas, so please show your support.
Support Down Syndrome Association of Nigeria

Wishing you all a peaceful New Year and hoping to share more inspirational stories and news with you throughout the year and to hear all your news. With love to you all and special hugs for all my friends with Down Syndrome, you are my inspiration!

Penny

Te souhaitant tout une nouvelle année paisible et espérant partager des histoires plus inspirées et des nouvelles avec vous tout au long de l'année et entendre toutes vos nouvelles. Avec amour à vous tout et des étreintes de special pour tous mes amis avec Down Syndrome, vous êtes mon inspiration !

Ihnen allen ein ruhiges neues Jahr wünschen und hoffend, inspirierendere Geschichten und Nachrichten mit Ihnen während des Jahres zu teilen und alle Ihre Nachrichten zu hören. Mit Liebe zu Ihnen alle und Specialumarmungen für alle meine Freunde mit Down Syndrome, sind Sie meine Inspiration!

Deseándole todo el un Año Nuevo pacífico y esperando compartir historias y noticias más inspiradas con usted a través del año y oír todas sus noticias. ¡Con el amor a usted todo y los abrazos del special para todos mis amigos con Down Syndrome, usted es mi inspiración!

My visit to Down Syndrome Association of Nigeria (part 3)

2009-12-12T17:52:00.003Z

At the Awareness Seminar, the presenter next to me was a lady called Elsie Akerele. Her presentation was a poem she had written about her son to explain to other parents the joy of having someone with Down's Syndrome in your life. Part way through where she mentioned his name, I realised her son was David, a quiet, pleasant, very talented musician I had already met at the DSAN school.

I have her permission to share her poem with you.

My Angel has Down Syndrome

Yes!

His birth unusual; his growth, unique;

His make, different.

At first a challenge and later a task,

And finally an assignment,

And then a mission.

My Angel has Down Syndrome

I needed the grace, he needed the love.

His siblings were aware of the work on ground.

Their input is beyond what money could buy.

They needed to extend their unconditional acceptance

To the new arrival in the home of ours.

My Angel has Down Syndrome

I learnt to make him my angel, my friend,

My companion and my closest acquaintance.

And I got the shock I never bargained for.

The way my Angel responded to training,

He yielded to love,

He embraced my friendship,

He was encouraged to learn some skills,

He dances like bees and drums better that the drummer boy,

He sings like birds and his laugh infectious.

My Angel has Down Syndrome

And soon, my Angel was noticed by all and sundry

He began to be loved by the neighbours and authorities

His gifts and skills have made room for him

He stands before kings and acts before princes.

To the priests, he is just the friend they want.

My Angel is humorous and so compassionate.

Is that a gift or also a skill?

You should know where I'm coming from!

We became friends and the best for sure.

My Angel has Down Syndrome

Wherever he goes, I'm always invited.

If he sees the kings, I'm seen by kings.

If he is beamed in the media, I am always accomplished.

We compliment each other in our great assignment.

My Angel has Down Syndrome

His credentials include story telling,

Children supervision and interceding for people.

David my Angel, the weak has been strong,

The fool has become wise, the poor has become rich.

And today this scripture is here fulfilled:

"That all things work together for good to them that love God

And are called accordingly to His purpose."

My Resolve

I'll love the more to gain twice as much.

My mission in life is right on course.

My Angel is the catalyst of who I am,

And a great aid to where I am.

With David, I have learnt my lessons aright,

And placed my priorities right as well.

When I'm left with the weak,

The Lord supplies the strength I need.

When I stay with the fool,

The Lord remains my wisdom.

When my portion is with the despised,

Christ remains my lifter.

My Angel has brought me from obscurity to limelight,

A royalty I never bargained for.

I share fame and glory with him;

I enjoy privileges with him.

He is now one of the greatest treasures

I have found in life.

He's given my life a meaning -

The greatest things God has done for me.

Who is Your Angel?

Locate him and the Lord will turn your pains to gains.

My Angel has Down Syndrome

A BLESSING IN DISGUISE!

My visit to Down Syndrome Association of Nigeria (part 2)

2009-12-05T19:44:00.006Z

Tuesday October 6th

My next official engagement was a presentation at the Awareness Seminar which took place at the local hearing impaired school.

When we first arrived the hall was practically empty, but gradually it started to fill up, particularly when the children from the Down Syndrome centre and the Hearing Impaired School arrived. At first they were all seated in the middle, but before we got started, our MC for the day Chuks asked all the adults to take one of the children to sit with them.

There was a lovely moment when one man led a young lady with Down Syndrome to sit with him and then turned round to find there were two sat beside him - he hadn't realised that they were twins and there was lots of laughter about him getting two for the price of one.

Then it was time to begin my presentation which was about some of the medical issues our young people can face and the importance of identifying and treating these in order to ensure they can be as healthy as possible. I highlighted what some people with Down Syndrome can achieve with good health care and given suitable opportunities, using Sujeet Desai, Dylan Kuehl and Karen Gaffney as examples.

We were also treated to a dance performance by some of the pupils from the Down Syndrome School.

All together it was a very successful event and again there was lots of media coverage.

More in part 3 to follow soon

My visit to Down Syndrome Association of Nigeria (part 1)

2009-12-02T13:21:00.002Z

At the beginning of October I spent 10 days in Lagos, Nigeria as the guest of the their Down Syndrome Association during their Awareness Week. The President of the Association had originally approached me to speak at a seminar as she was aware that I was an advocate for Down Syndrome and had 20 years experience that could be drawn on to assist them.

They were not in a position to fully fund my trip, nor could my own organisation Down's Heart Group as their charity registration only allows work in the UK, but I was so keen to offer what help I could, that I took on the job of raising the necessary funds myself. With the help of some fantastic support from Down's Heart Group members, friends on Facebook and Stepping Stones Nigeria, I was able to raise the money for my travel, visa and vaccinations and I suggested that I lengthen the trip to enable the Association to make as much use of me as possible. So it was that I found myself at London Heathrow on a late night Friday flight to Lagos for my first ever visit to Africa.

I managed a few hours sleep before our early morning arrival and needn't have worried about arriving ahead of schedule as the slow progress through passport control and luggage reclaim soon sorted that out, but eventually, melting in the heat, I made my way into the arrivals area wondering how easily I would find the DSAN representatives that were going to be meeting me. My concern melted away, when just the other side of the arrivals hall, I was met with a sea of DSAN printed t-shirts and green baseball caps, all on bodies jumping up and down and waving excitedly at me. It might have been 5am, but they'd come out in force to welcome me.

After a journey in the Association minibus, in which I was very thankful for the aircon, I got my first sight of their resource centre and finally got to meet Rose Mordi, the Association President and Founder. There were some hurried introductions before I was whisked away to the guest house where I was staying, where I had just enough time to quickly open my suitcase, change my trousers and don the polo-shirt they had given me before we headed off to the start of the Awareness Walk through the streets of Lagos.

It was hot, although I was the only one who seemed bothered by it! Everyone had a great time and there was lots of interest from motorists and passers-by.

Afterwards we all gathered together for photos and to talk to the press. Everyone was laughing at how hot and red in the face I was.

More in part 2 to follow soon

Dakota's Pride

2009-11-29T14:28:00.004Z

I've just had the delight of watching "Dakota's Pride" which Girard Sagmiller very kindly let Down's Heart Group have a copy of. If you haven't seen it, I would recommend you try to get hold of a copy as it's a wonderfully uplifting and honest piece about Girard finding out about Down's Syndrome and the expectations for his son Dakota. It's available on Amazon.

Amongst many others it features clips with Brian Skotko, whom I have only recently come across but already hold in extremely high regard. He has used his personal experience of growing up with a sister with Down's Syndrome and brought that to his work as a doctor in paediatrics - I envy those parents who get the diagnosis from him, because I cannot imagine a better or more positive person to recieve that news from.

In "Dakota's Pride", there is a brilliant section where Brian talks about people with Down's Syndrome, the possibilites and what they bring to a family.

Can people with Down's Syndrome drive cars today? Yes.

Can people with Down's Syndrome get married? Yes.

Can people with Down's Syndrome hold jobs, get into the National Sports Hall of Fame and be an accomplished violinist? Yes.

People with Down's Syndrome are shattering our expectations, but the true magic, I remain convinced nestles in the small accomplishments that exist every day. If you have a child that doesn't go on to be a concert violinist, he's going to have some other magic, some other treasures that will happen on a day to day basis. And how lucky are you the parents to be able to find these every day.

So let's not treasure the big accomplishments, the true highs happen on a day to day basis.

I think my reaction is summed up brilliantly by my long time friend Kathy Ratkiewicz commenting on Amazon's website, in her capacity as Vice President Down Syndrome Family Support and Advocacy Group of Michigan.

I watched the most amazing documentary last night..Dakota's Pride.

I highly recommend it. The documentary is about one family's search for answers about Down syndrome. Like many of us, they were taken by surprise when their child was born with Ds. they went through the usual stages of grief, then decided to educate themselves about Ds. There are family interviews, interviews with young adults who have Ds, some doctors, a pastor, therapists and lots of scenes of people with Ds. there is a great segment with a singing group of young adults with Ds singing and signing a song (tissue alert;-) especially for the longer segment at the end.

Too many good comments by the people interviewed to list,,, well worth the price and well worth the time it takes to watch it (over an hour). Excellent for new families too. I wish that doctors could watch it. I think that it might very well change their minds about what life for and with people with Ds really is like.

Positive publicity just before Christmas

2009-11-28T21:01:00.006Z

Here in the UK, Next have just run a competition on Facebook for child models. Parents were able to enter their children online and voting also took place online with anyone being able to vote once for any child, even if they were not a Facebook user.

The competition ran for about a month and about half way through I became aware of two children with Down's Syndrome who were entered, I thought this was a great chance for some positive publicity for our kids, so I decided to make as many of my friends in the Down's Syndrome world aware so that they could vote for them if they wanted.

About a week later I was told about another entrant with DS and then another, so that by the closing days I was aware of 9 entrants who had Down's Syndrome. Sadly it was a bit too late to rally enough support for all of them, but there were lots of wonderful comments about them all on my Facebook page and I'm sure you'll agree they are all gorgeous!

The top 100 finalists at the close of the competition are all being invited to a photo shoot at Woburn Abbey on December 21st and two them have Down's Syndrome and both have had heart surgery - isn't that a wonderfully positive message. I'm really excited about this, especially as I am going to be lucky enough to go along to Woburn to meet them on the day.

Congratulations to both Hannah and Harvey. I know that only 2 of the final 100 will be chosen to model for Next, but you did really well to be in that 100 and I hope you are going to have a wonderful day at Woburn. I am going to do my bit by trying to get some press coverage for the final so hopefully even more people will get to see your beautiful smiling faces.

The five stages of grief or are they the five stages of change? Does it matter?

2009-11-25T19:32:00.001Z

Just the other day I saw a posting about this open letter on a forum.

Open letter to parents facing a diagnosis of down syndrome

I thought it was very good, as did most people who responded, but this particular comment from J caught my eye.

I thought the letter was good but I so wish people didn't refer to "grieve for the baby you thought you were going to have". To me you grieve when someone dies and I never felt my baby died. I certainly felt fear and I went through a re-adjustment process and it was a tough road with lots of tears and fears but it was much more about getting my head around this new life we would now lead (Holland instead of Italy Welcome To Holland by Emily Perl Kingsley) and not about grief or death.

These responses from S and A got me thinking as I have experienced both being told my son had Down’s Syndrome and then his loss a few months later .

S said - You make a really good point, so I looked up the definition of grief online. As I thought, although it's commonly associated with death, it's not exclusive to it. The definition is "keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret.".

And the five stages of grief, according to the Kubler-Ross model on Wikipedia, are:

Denial - "This can't be happening." (Maybe they got the diagnosis wrong)
Anger - "Why me? Who is to blame?" (Did I do something that caused this? What caused it? What's to blame?)
Bargaining - "Just let me live to see my children graduate" (Just let me child not look *too* like the others / so long as my child's not *too* delayed)
Depression - "What's the point?" (My child isn't going to achieve very much anyway, so what's the point of fighting everything?)
Acceptance - "It's going to be okay." (My child brings so much joy, he is happy and beautiful, and, besides, academic success doesn't guarantee happiness, so it's all okay.)

A said- The 5 stage of grief are equally used as the 5 stages of change

The change ones go:-

Denial - "I'm sure I parked my car here"
Anger - "Oh **** some **** nicked it"
Bargaining - "If I just go away and do xyz, when I come back it'll be there"
Depression - "Oh **** it really has gone"
Acceptance - "I guess I'd better call the insurers"

The model can be applied to all sorts of behaviours and not just grief and it's a very useful one to help new parents understand what's happening to their feelings and emotions.

These got me thinking about whether or not I went through the same kind of feelings after being told that Daniel had Down’s Syndrome and after losing him and actually I did. The thoughts that went with each were different of course, but the underlying stages were the same.

Down's Syndrome diagnosis

Upon getting the diagnosis I definitely went into denial, immediately thinking they must be wrong. Back then I knew little about Down’s Syndrome other than people with it looked different and were born to older mothers (I said I knew little), so my reasoning was as it was my 29th Birthday, I was way too young ergo it must be a mistake.

Then I pretty quickly realised that although we needed the blood test results to prove it, they were unlikely to have said anything unless they were sure, so it must be true in which case what had I done to cause it? I remembered having a couple of glasses of wine at Christmas before I knew I was pregnant and taking some Paracetamol for a headache – could that be it? But that seemed a pretty extreme result for such small actions, especially when I knew mums who had smoked and drunk a lot more than that throughout their pregnancies and had perfectly healthy babies. That left me with some kind of payback or divine retribution for past misdemeanours, but I was fairly convinced that if I’d done something bad enough to warrant such a severe punishment, I would at least be able to remember it.

I think I got to the bargaining stage fairly quickly as we got the diagnosis of his heart and bowel problems at four days and then it didn’t matter what was wrong with him as long as they could do something about those so that he would live. He came through his colostomy surgery and was transferred back to our local hospital to grow before they could do his heart surgery and the bargaining changed to a waiting game. Depression followed pretty quickly on from that as we fretted daily about his lack of weight gain and it began to look as if he would probably be in hospital for the first year of his life, but then the decision was taken to do a temporary heart op.

I remember being terrified that he wouldn’t come out of theatre, so when he did I finally began to believe that everything was going to be ok – acceptance. Little did I know that just a few weeks later I would be going through the whole process again.

Losing Daniel

This time the denial came when we arrived at the hospital after a call just after midnight. We knew that it was bad for them to have called us because so many times we had been told “we nearly called you but then he picked up”. But even as we drove through the early morning fog, me sat in the passenger seat with tears streaming down my face it never crossed my mind that by the time we got to the hospital he would be gone. I couldn’t comprehend what we were being told, we couldn’t possibly have been through all that we had in those 14 weeks for it to end like that. Even when I saw him and held him, it didn’t seem real and I just couldn’t get my head around it.

Next came the anger, although not anger as such but a need to understand what had happened, how just when everything had seemed to have turned a corner and he was finally gaining weight and getting onto lower oxygen levels that it could all change so quickly and dramatically. We even agreed to a post mortem to get answers and I was so frustrated when it didn’t prove anything conclusive, all they could offer me were suppositions of what may have occurred. I wanted facts!

I don’t really recall much in the way of bargaining, there didn’t seem much left to bargain with to be honest. This terrible unthinkable thing had happened, my son had been taken from me and I just wanted be given some form of understanding of why my family and I had had to go through all the heartache only to lose him at the end. It all seemed so very, very unfair.

Then came the depression, it was bad and I think the only thing that got me through was knowing that our eldest who was still only 18 months needed me. He was still a baby, his world had been turned completely upside down for the past 3 months and he could not manage without me, so I had to go through the motions if only for him. I have to confess that as far as I was concerned my husband just didn’t feature at that time, we dealt with our loss in our own different ways and at different time. It was only when we realised that that was what was happening and were able to accept that that was a normal process, that it didn’t reflect either of us feeling or caring any less than the other, that we were able to share our grief together.

And finally the acceptance that we couldn’t change anything, the worst imaginable thing had happened, it couldn’t get any worse and we had no option but to move forward with our lives.

It was hard and it took a long time, in fact sometimes I still think I go back through the depression and acceptance stages occasionally, usually around Daniel’s birthday and anniversary. For a long time I felt guilty that I didn’t bond immediately with him after birth like I did with his big brother, I thought it was because of the Down’s Syndrome, but eventually after the birth of number three I accepted the truth. Partly it was because the birth of your first is different because you don’t know what to expect, but mainly because my first was easy and straightforward whereas Daniel was face up which made it more painful.

Then I had a retained placenta, so instead of lovely cuddles and natural bonding, he was given to his dad and all focus was on me. I ended up in theatre and by the time I came round, he was in Special Care. Before I got to see him again we had been given the diagnosis, so when I really got to hold him properly for the first time, it was a surreal situation with alarms going off everywhere and me in a wheelchair with a drip in my arm. Hardly the best scenario.

Strange how emotions can playa round with your mind and make someone who is normally quite logical think the most illogical thoughts. I mean in moments of depression and sadness in the past, I have wondered if we lost Daniel because I didn’t love him enough, didn’t accept him and for one fleeting moment actually thought about leaving him in the hospital and going home to my ‘perfect family’ without him. Yet for years on his birthday or anniversary I have written poems about my feelings and surrounded myself in constant reminders of him by becoming involved in the Down’s Syndrome world, which clearly is not the most logical thing to do in those circumstances.

So yes, finally I have acceptance. Acceptance that my reactions and feelings at diagnosis were ‘normal’; that we might have made different choices had we known how things would pan out, but that we did what we thought was best for both our children at the time. And most importantly that I did love my little boy with all my heart, I was just too scared to acknowledge it in the beginning because underneath I was terrified of losing him.

And finally acceptance that he gave me the greatest gift that anyone could give me, the passion and desire to try and use my experience to help other families and perhaps that was the reason for it all.

What brought me here?

2009-11-23T18:39:00.003Z

Back in July 2007 I wrote this piece for an online site and when I decided to start a blog, it seemed an obvious place to start and to be the blog name.

I guess for most people the ‘Meaning of Life’ is all about having enough money to live the life you want: have a nice home; nice car, go on holidays, have kids if you want, go out etc. and basically life is just a continuation of that, constantly striving to maintain and improve on what you have. You may occasionally be touched by outside influences, a major disaster perhaps, but generally life just continues along the same path and you are largely unaffected by things outside your immediate circle. Sometimes though, something major happens in that inner circle that makes you re-evaluate what is important and can have far reaching consequences on your perception of the ‘Meaning of Life’ - for me that something happened in August 1989 following the birth of my second child.

Prior to that I was a wife and mother, striving to get the best for my family, keeping the house clean, looking after our son, making sure he was fit and healthy, had nice clothes and toys. Our second baby was due and I had planned a short stay in hospital for the birth followed by a quick return home where we could continue our idyllic existence as a family of four. It even seemed that it was all going to work out better than planned when I went in to labour a month early in the early hours of my birthday – who could have asked for a better birthday present!

It couldn’t have been further from the truth! By the end of the day we had a baby in Special Care and we had been told that they were sure that he had Down’s Syndrome. The next few days were a blur, lack of sleep, plenty of tears, desperately trying to get my head around the diagnosis and the fact that it could happen to someone who was only 29. Worst of all was learning that like 47% of babies born with Down’s Syndrome, our little boy, Daniel, had congenital heart defects which would require open heart surgery when he was a little older.

The following weeks were like being constantly on a roundabout never able to get off – there was one problem after another with Daniel: he needed surgery for a bowel blockage and ended up with a colostomy; he wasn’t gaining weight so had to be fed by a tube down his nose; he needed oxygen constantly and then he had to have a temporary heart operation to help him grow until they could do the full repair. All this time he was in hospital, either locally or in London and we were travelling back and forth to see him and yet trying to maintain as normal a life as possible for our older one.

Needless to say the ironing and housework suffered badly and I started to fret about that until a friend pointed out that it would all still be there when things settled down and my priority had to be the children. That I think was the beginning of my change in perspective on the ‘Meaning of Life’ and over the next few months it was to change forever.

Suddenly and quite unexpectedly, Daniel lost his battle for life in November 1989 aged fourteen and a half weeks. Despite how ill he had been it was something that I had never contemplated and it was such a devastating occurrence that even now I'm getting emotional as I sit here and write about it. Neither my husband or I had ever had to arrange a funeral before and yet here we were organising that of our baby boy – it completely went against the order of nature.

It was a tough time, friends and family tried to be supportive but unless you have been through a similar experience you really can’t imagine what it’s like. I lost my dad when I was only 14 and as an only child a lot fell to me to support my mum - that was hard but believe me nothing like losing a child. To make things worse my husband and I found that we were coping with the grief differently and in different time frames, which put a strain on our relationship until we were able to recognise and accept that it was normal for that to happen.

Fortunately I had already discovered Down’s Heart Group, a support group for families with members who had heart problems and Down’s Syndrome, and they linked me with some other bereaved parents. Here I found people who could genuinely appreciate what I was going through and talking to them was a great source of comfort in those early months – I guess this was about the time that my final rethink on the ‘Meaning of Life’ took place.

Fitting back into ‘normal’ family life just wasn’t an option, this terrible thing had happened and whilst I couldn’t dwell on it, neither could I just carry on as if it hadn’t occurred, that would have been like denying Daniel’s life and as tough as it was there was no way that I could do that. So a bit of a life change was required! I started worrying less about the house being spotless and spent more quality time with our eldest but I also needed something to keep my mind active. I realised that talking to other parents had helped me so perhaps I could use my experience in some way to help other families – helping Down’s Heart Group seemed an obvious path.

That was over 17 years ago and I am still doing it. Over those years I have met some fantastic and inspiring people with Down’s Syndrome, some truly amazing parents (including one family who have twins with Down’s Syndrome and yet are the most positive people you could meet). I’ve shared highs and lows with families and yes, the loss of one of their children is an emotional reminder that can be hard as it brings back so many memories. Yet as we approach what would have been Daniel’s 18th birthday, I wouldn’t change any of it.

It’s been a tough road to travel and I know there are still hills (if not mountains) ahead to be climbed, not least August 2010 when I hit 50 and Daniel would have been 21, but life now has a new and different meaning and I have Daniel to thank for that. Yes I still work and strive for a comfortable life for my family, but I have a different view on what really matters in life and whilst I can’t change the world on my own, I hope that in a small way I am able to help others whose journey through life may be harder than mine.

So what is the ‘Meaning of Life’? Well I guess for me now it’s about accepting diversity in people, valuing everyone as an individual and trying to help others in any way that I can, which doesn’t have to be huge monetary gestures because small acts of kindness can mean so much more. And I guess most of all it’s about appreciating what I have and the things that I have experienced rather than worrying about things that I’ve missed out on. My initial reaction to Daniel's birth may have been that it was a disaster, now I know that it was a blessing - he made me realise the true 'Meaning of Life'.

Down’s Heart Group is a UK national charity which offer support and information relating to heart problems associated with Down’s Syndrome. Their website is www.dhg.org.uk where full contact details can be found.