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Epidermolysis Bullosa - Carers UK Forum

Epidermolysis Bullosa

For issues related to specific conditions and disabilities.
Not us, but some friends of ours. They have a little boy who has a skin disorder, which means that his skin is missing an enzyme which makes it adhere to his flesh (we should all have it, making our skin stay stuck on our bodies). Well his doesn't. It means that little things like cuddles, nappy changes, clothes, food can make his skin blister and fall off. Has anyone seen that film about the boy who's skin fell off???? Well - it's THAT. Sometimes he has blisters inside his mouth caused by the friction of the food he's eaten, rubbing away the skin from the inside of his mouth. The blisters regularly burst and wounds bound and dressed. Our friends have 6 other children, all girls, who love him dearly and I really don't know how our friends cope with all this. He was regularly in and out of hospital when he was a baby, he's 3 now and just starting to walk (his feet blister and peel due to the pressure of him standing on them), but they treat all the children the same and ensure that the girls aren't pushed away, due to all the increased attention that their brother needs. One of them put her arms out to catch him, as he fell down when he was playing, resulting in his skin blistering and peeling and the poor girl was distraught, as it was a natural reaction to put her arms out to catch him. They all try and help him of course, but through all this pain and skin peeling and all the raw, bleeding skin underneath, he is always SMILING. He's such a wonderful little boy, always a smile on his face, except when it's really bad. At the moment there's no cure, they are just living as normal lives as they all can. They have my total admiration, they really do. Their dad runs marathons too, to raise money for the DEBRA charity, which aids and assists children with this condition. Amazing.
If you'd like to see, go to the DEBRA charity website and click on the real life stories. Look at Tie's story and there he is - SMILING!
wow,, wot a cutie!!!!!

thank u for sharing that fran!

It must very hard to cope with but it seems like its all taken in their stride,, hats off to them all!
Aw.......bless his heart xx
Poor little boy,it must be terrible both for him and his parents.
Well, mum and dad and all his sisters just carry on living a normal family life. I don't know how they do it, but they do. They're just all so happy most of the time and all so lovely, loving girls, I think they all look after each other somehow. The eldest girl is about 9 or 10 I think, not old.
I remember seeing a television programme about a little boy and the DEBRA charity. It must be so hard for the whole family, but they seem to have tremendous spirit and a lovely attitude to family life. I admire them greatly and good luck to them all in the future.
Ah, Blue, you're in Wales. They're on Anglesey, so you may have indeed seen them on your TV. Our friend does loads of fundraising things for DEBRA all the time in the hope that they will find a cure. He's always running marathons it seems.