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.

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.

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.