A DYING man who invited television cameras to share the last weeks of his life has had a huge impact on the charity he supported, it was revealed last night.

Jonny Kennedy, 36, from Newcastle, was the star of Channel 4 documentary The Boy Whose Skin Fell Off, which was broadcast in March.

Mr Kennedy impressed viewers as he talked in a matter-of-fact manner of how the rare skin disease which had blighted his life would soon kill him.

Now that the film is to screened again next month, the charity DebRA, which stands for the Dystrophic EpiDermolysis Bullosa Research Association, has paid tribute to the way Mr Kennedy has transformed their fortunes.

As a result of the programme, DebRA has raised an extra £500,000 and doubled the number of donors.

Best of all, the reaction to the documentary has given research into a potential cure a boost.

Philippa Stannard, spokeswoman for DebRA, said: "The extra cash has had a direct impact in terms of us being able to kick-start a long-term research programme, whereby we believe we may be just three years away from human clinical trials into effective treatments."

Six months after the film was shown, to critical acclaim, people are still getting in touch with DebRA offering their help and support.

"Many have decided to fundraise for DebRA, many have offered their professional services and many are still phoning to make a donation," she said.

During his life, Mr Kennedy tirelessly raised funds for DebRA, surprising those around him with his cheerfulness and good humour.

Poignantly, the charity campaigner died peacefully on a train back to his native North-East the day after achieving his ambition of attending a reception for the charity at 10 Downing Street, which was attended by Cherie Blair.

Few people have heard of Mr Kennedy's condition, yet if affects 5,000 Britons, including about 60 in the North-East. An incurable, untreatable hereditary disease, it turns the sufferer's skin into painful blisters.

Apart from being disfiguring, the condition often leads to difficult-to-treat forms of skin cancer.

* Channel 4 plans a repeat showing of The Boy Whose Skin Fell Off on Monday, October 4, at 8pm.

Published: 28/09/2004