Did anyone watch this moving programme?

[Chloe]

About the children with Harlequin skin (can't attempt the proper name ). It was on channel 3 from 8 - 9. The children had inherited a genetic problem which resulted in them having an abnormal growth of very thick skin. The amount of care and treatment this required from the parents was huge, two daily baths, taking two hours each time, followed by endless creaming. Both sets of parents on the programme had two children each with this condition. But regardless of their whole lives being consumed by this, they were all remarkable. The parents who must be totally stressed and exhausted, never complained, and the poor children seemed to have really lovely personalities and outlooks. At the end we were told that there have been recent breakthroughs which hopefully in the next couple of years could bring some relief. Lets hope so, they deserve it. Chloe

[ORLANDO_MAGIC]

I could only watch for about 20 minutes and had to turn it over because it was so sad.

John.

[steph_goodrum]

I have to confess I was going to watch but was out and having read a couple of articles in the paper this week about one of the families wasn't sure I'd be able to see it.

I know my daughters excema was very severe when she was younger and we had to follow similar routines and there have often been times when it was infected or her feet have been so bad she couldnt walk on them but it was nothing compared to their condition, there is another equally distressing called "butterfly skin" which is the opposite end of the spectrum where the childrens skins is so thin it blisters and peels really easily which must be so distressing for thefamilies as with both conditions there is no known cure and the treatments available to attempt to control them are almost as painful as the condition themselves.

[luckylady]

I watched this programme was very sad,
The children were lovely and accepted their condition
The parent dedicated their life to help the children
But one question I have to ask
Why bring another child into this world when you have had one with this condition
Knowing full well the risks
I cannot understand

[chrizzy100]

<blockquote id="quote" class="ffs">quote:Originally posted by Chloe
About the children with Harlequin skin (can't attempt the proper name ). It was on channel 3 from 8 - 9. The children had inherited a genetic problem which resulted in them having an abnormal growth of very thick skin. The amount of care and treatment this required from the parents was huge, two daily baths, taking two hours each time, followed by endless creaming. Both sets of parents on the programme had two children each with this condition. But regardless of their whole lives being consumed by this, they were all remarkable. The parents who must be totally stressed and exhausted, never complained, and the poor children seemed to have really lovely personalities and outlooks. At the end we were told that there have been recent breakthroughs which hopefully in the next couple of years could bring some relief. Lets hope so, they deserve it. Chloe
[/quote]
'
There is a piece about it on this website .....

http://www.qmul.ac.uk/news/newsrelease.php?news_id=148

[Chloe]

Barbara I also wondered why on Earth they would take that risk, knowing that there was a 1 in 4 chance of another sick child, and also having to cope with the first child. I can only imagine that they felt a desperate need to produce a healthy child. Chloe

I couldn't watch, anything with children and Im in tears[msncry]

[CarolAnn]

Puts alot of things into perspective doesn't it

[florida4sun]

There is no explanation to it. We were in the same postion once but glad we had a second child. It's nothing to do with producing a healthy child, as that would put the first child into second place. It is just not possible to do this.
It is all too easy to look in from the outside and have black and white answers.
One thing wse are trying to to do is to get children from so called 'normal' schools' to do a few days work experience in a specail school. It is a wonderful thing, and kicks prejudice and misunderstanding right out of the window. Often children will volunteer to top do more They all come out of it with a totally different attitude. I have seen real 'hard cases' humbled by the experience.
If anyone has the time, offer it to your locla specail needs school, they need all teh help they can get and you will get 100 times out of it, to what you put in

[chris c]

You are so right Martin.

Working with children with special needs is very hard work, but it is also really rewarding.

Although I did not work with disabled children, I spent over 8 years as a learning support assistant in a secondary school helping pupils with learning difficulties. The feeling of elation when they did better than expected, was wonderful, both for them and for me!