Happy Birthday Helaina
We've been over to Manchester today for my cousin's daughter Helaina's fifteenth birthday party and here she is in front of all her cards:
It's not the best photo ever but it does, I think, show how tiny she is and also how sunny-natured.
I've written about Helaina before, of course - she has Costello's Syndrome and her parents, Colin and Cath, have done wonders in getting research for the condition and bringing it to public attention. Here's the website: there's a video about Helaina at the bottom of the page, filmed when she won the Woman's Own Children of Courage Award in 2007.
One child has it out of every three and a half million babies born, so as you can see, it's rare. It's a bit like Down's Syndrome and brings with it all sorts of problems: learning difficulties, curvature of the spine, cancer - which Helaina has had twice - and heart problems, to name but a few.
When she was born it was held to be unlikely that she would walk or talk. She does both. She smiles a lot, too, has a great sense of humour, and really enjoys her life, thanks to Colin and Cath's continuing care and positive outlook. She loves books - when she comes to our house she spends hours going through the whole bookshelf of Olli's children's books. It's impossible to tell quite what she makes of them but she most certainly enjoys them.
She's been on heart medication for ages because of an irregular rhythm, which in general worsens with age in Costello's children. Recently, they took her off it for a while with the idea of changing to a different medication, but they waited for it to get out of her system first.
After a few days it should have been out of her system but her heart continued to beat normally. To everyone's surprise, it has continued to do so and she hasn't needed more heart medication.
The thing is, I think Helaina's never quite taken on board the - theoretically - terrible hand she's been dealt in life - - so she just gets on with it, and has, I'm certain, had a far better time of it than many people with more obvious advantages.
And now she's fifteen. Happy Birthday, Helaina.
It's not the best photo ever but it does, I think, show how tiny she is and also how sunny-natured.I've written about Helaina before, of course - she has Costello's Syndrome and her parents, Colin and Cath, have done wonders in getting research for the condition and bringing it to public attention. Here's the website: there's a video about Helaina at the bottom of the page, filmed when she won the Woman's Own Children of Courage Award in 2007.
One child has it out of every three and a half million babies born, so as you can see, it's rare. It's a bit like Down's Syndrome and brings with it all sorts of problems: learning difficulties, curvature of the spine, cancer - which Helaina has had twice - and heart problems, to name but a few.
When she was born it was held to be unlikely that she would walk or talk. She does both. She smiles a lot, too, has a great sense of humour, and really enjoys her life, thanks to Colin and Cath's continuing care and positive outlook. She loves books - when she comes to our house she spends hours going through the whole bookshelf of Olli's children's books. It's impossible to tell quite what she makes of them but she most certainly enjoys them.
She's been on heart medication for ages because of an irregular rhythm, which in general worsens with age in Costello's children. Recently, they took her off it for a while with the idea of changing to a different medication, but they waited for it to get out of her system first.
After a few days it should have been out of her system but her heart continued to beat normally. To everyone's surprise, it has continued to do so and she hasn't needed more heart medication.
The thing is, I think Helaina's never quite taken on board the - theoretically - terrible hand she's been dealt in life - - so she just gets on with it, and has, I'm certain, had a far better time of it than many people with more obvious advantages.
And now she's fifteen. Happy Birthday, Helaina.
posted by Daphne at 7:12 pm
1 Comments:
Happy birthday indeed. I'm glad you shared Helaina with us again.
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