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Last Updated: Tuesday, 6 April, 2004, 18:40 GMT 19:40 UK
Skin condition boy's brave fight
James Dunn
EB means James' skin blisters and falls off, leaving open wounds
James Dunn has a rare skin condition which means it blisters and never heals, leaving him with permanent open wounds.

The genetic condition epidermolysis bullosa (EB) means the 10-year-old from Calderstones, Liverpool, is in constant pain.

He is among 600 sufferers in the North West, but only a handful have as severe symptoms as James.

Now his mother, Lesley, is trying to raise awareness of the condition.

Every day she spends two hours removing his bandages - a process which, while necessary, leaves James in pain.

James Dunn in wheelchair
A "cheeky little chap", James does not let EB get him down

Even the slightest contact can rip the skin from his body.

But the brave boy says going to school and playing disabled hockey helps him to take his mind off his condition.

His mother told BBC North West Tonight of the day she first realised her son had EB.

She said: "He just never even slipped or tripped.

"It was a little movement and I felt this wetness on my hand.

"His skin had come off like a glove and that was it. It was the worst thing any mother could experience."

The more awareness we can create the more income we will get and the sooner we will get there for the cure
Tony Eckersall, Debra
She added: "I want him to grow up and go to the pub, have girlfriends, have a life and a nice job.

"That's what I want his future to be, but I don't know what's going to happen."

Now, she says, she wants to increase awareness of the condition and, hopefully, the amount of money spent on research into it.

Tony Eckersall, from the charity Debra, which raises money for research into EB, said: "EB is caused by one defective gene in the make up.

James Dunn
James and his mother spend two hours a day changing his bandages

"Unfortunately they don't know until the baby is born that they are carrying that defective gene and, in James' circumstance, it was both parents that carried the defective gene so he got the worst kind of EB.

"Advances are being made by our researchers who are all over the world. They are all collaborating together to work towards clinical trials which they are looking forward to in the next few years.

"The more awareness we can create the more income we will get and the sooner we will get there for the cure."

He added: "James is a cheeky little chap. I happened to bump into (Liverpool footballer) Jamie Carragher's father on holiday and he offered to take James and another lad, Connor, to the see the lads train at the training ground.

"Unfortunately I forgot all about James being an Everton fan, and he was determined to wear his blue shirt and tell them what he thought of the club. Luckily he didn't and he enjoyed himself that day. It didn't turn him into a Red, though."


WATCH AND LISTEN
The BBC's Helen Wakefield
"James has EB. It means his skin blisters and comes off with the slightest friction."



SEE ALSO:
The Boy Whose Skin Fell Off
23 Mar 04  |  Review


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