Harry's story

"Harry's big passion in life is football - the school have been great and Harry is assistant manager for the school team. The Head is very impressed that the team actually listen to Harry's advice and he and Harry often talk tactics in the school corridor!" Zara, Harry's mum.

Zara continues Harry's story:

"Harry has EB Simplex, Dowling Meara. It was evident from the moment he was born that something was wrong, we just didn't know what. The delivery team noticed that he was blistering, and skin was rubbing off as they were cleaning him up. They thought he had an infection. He had skin missing from his legs, and we later learned he had deep wounds to his heels, which had been caused when he was rubbing his heels against my ribs while I was pregnant with him.

"Harry suffers blistering all over his body but doesn't seem to be affected internally. During the summer he has very big blisters and his hands and feet are particularly sore. He has a wheelchair, but tries very hard not to use it.

"We cope with most of Harry's care and use Calpol for pain and to do his blisters. We're trying to encourage Harry with some responsibility for checking himself over but he's not good at admitting something needs treating. He has one to one support at school, and his carer will do skincare during the day if he gets sore. We also have a local nurse from the Children's Community Nursing team, who comes to see him. We were very dependent on the team in the early days, but less so now he's getting older.

"Harry loves school and wants to be just like everyone else. He does his best to take part in PE and games, and lessons are adapted as much as possible. His big passion is football - the school team won the Hampshire Schools Cup this year - and he hates that he can't play competitively.

The photo shows Harry with England and Portsmouth goal keeper David James.

 Harry is also in Cubs and coached their team in a football tournament. He's also learned to swim and wears a ‘stinger suit' in the pool which covers his whole body from neck to wrists to ankles - the suit is also great for the beach.

"Harry is getting to an age where he could do with talking to people a little older who have EB as he's beginning to struggle with the limitations the condition imposes in him - the unfairness of it all. I would like someone to say to him " Yeah, it sucks, I know because it did for me too. But it will get better".

"As much as we want to protect Harry, we realised early on that we can't wrap him up in cotton wool and it's not necessarily the right thing to do. We let Harry take the lead - if he wants to have a go at something, we let him. He now knows what can damage his skin so the choice is his. Usually he'll go ahead and do whatever it is, which is a great attitude and he won't let himself be beaten by his condition.

My advice to parents would be don't beat yourself up over the blistering or wounds. Accidents happen, and sometimes the wounds can't be avoided. Your child wants to experience life, not be kept safe inside. But it's easier for me to say this as Harry has a good prognosis and other families coping with EB may not have that."