Page last updated at 11:36 GMT, Tuesday, 28 April 2009 12:36 UK

Research hope to skin blister boy

Tie Davey
Tie's parents hope the research will eventually help their son

The family of a young boy suffering from a skin blistering condition hope new research will save his life.

Tie Davey, two, from Llangefni, Anglesey is one of 5,000 people in the UK with Epidermolysis Bullosa (EB).

The genetic condition causes his skin to blister and rip at the slightest friction, and also affects him internally.

Professor John McGrath at King's College London said first results from a new treatment were 'remarkable'.

The condition is caused because Tie's body is unable to produce a type of collagen which means his skin breaks down easily.

Fund raise

"When Tie's eyes blister he has to spend his time in a darkened environment until they have healed," said Tie's father Peter Davey, 34.

"Every day he has to be examined several times for new wounds and blisters, and old wounds have to be redressed.

"All this is time consuming and distressing for Tie, who has to be given painkillers and morphine to counter the pain he suffers every day and night," he added.

The family have been constantly raising money to help pay for research into the condition, with the latest event being a series of bike rides and walk on 25 May.

Mr Davey said he and his wife Claire, 28, were "shaking with excitement" that the new treatment could help Tie as the current prognosis was not good.

Future

"His future prognosis is one of gastric tubes, and severe disability following the webbing and fusion of fingers and toes. Eventually he will develop aggressive cancer, and his best life expectancy is 30 years," he said.

Professor John McGrath, at King's College London and Guy's and St Thomas's NHS Foundation Trust, has treated eight patients with the condition.

He said so far, results are only available for five, but all have shown improved wound healing and a reduced tendency to blister.

"Although there is currently no permanent cure for EB, this new form of cell therapy is the most helpful clinical intervention I have done in a long time - wounds heal rapidly and the skin looks and feels better," he said.

"It is nothing short of remarkable," he added.

"We need to fund more research to work out exactly how the cells promote faster wound healing, but it's very satisfying to be able to deliver a treatment that makes a big difference to someone's quality of life," he said.



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