Sunday, 14 November 2010

Daniel's 21st Angel Anniversary

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.

Wednesday, 4 August 2010

The day after D Day

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.

Tuesday, 3 August 2010

Who am I?

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.

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.

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.

Monday, 2 August 2010

D day is in less than 4 hours

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 ...

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!

Monday, 22 March 2010

Down's Syndrome Association 40th anniversary

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

Tuesday, 16 March 2010

Celebrating World Down Syndrome Day

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 21st.  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:

  1. 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.

  2. 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.

  3. 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 21st.

Wednesday, 20 January 2010

Daniel Green Memorial Celebration

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:
  1.  My husbands eldest niece was 18 the day after Daniel was born

  2. 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!)

  3. 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:

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?

Sunday, 10 January 2010

To terminate or not?

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 to ensure that appropriate resources are available both for the potentially increasing numbers of therapeutic abortions and also for the babies who will still be born with Down’s syndrome."  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.

Wednesday, 6 January 2010

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

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.

Tuesday, 5 January 2010

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

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.

Monday, 4 January 2010

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

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!

Sunday, 3 January 2010

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

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 TrĂ© 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.  

Saturday, 2 January 2010

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

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.