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

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 ...

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 ...

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 ...

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 ...

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 ...

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

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

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

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:

1. 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
   
   
   

2. 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
   
   
   

3. 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)

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)

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)

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

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

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.