First transmitted in March 2004

Jonny Kennedy died in 2003 aged 36. He had a terrible genetic condition called Dystrophic Epidermolysis Bullosa (EB) – which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonising sores and leading to a final fight against skin cancer.

In his last months Jonny decided to work with filmmaker Patrick Collerton to document his life and death, and the result was a film, first broadcast in March 2004, that was an uplifting, confounding and provocatively humorous story of a singular man. Not shying away from the grim reality of EB, the film was also a celebration of a life lived to the full.

When it was first shown, The Boy Whose Skin Fell Off captivated nearly 5 million viewers and helped to raise £500,000 for the EB charity DebRA. Channel 4 is re-screening the film and re-visiting Jonny's family to see how they have come to terms with his death and the public's reaction to the film.

Jonny was frank about his feelings on his upcoming death and practical about the arrangements. The film featured moving interviews with his friends and family, including his mother Edna, who had been his life-long carer and faced the prospect of Jonny's death with disarming mixed feelings, torn between relief for Jonny and knowing that she would miss him desperately.

But the film, and the reaction it has had from viewers, has had a profound effect. "It's been an unbelievable experience," she says. "Jonny wanted to do the film to get EB and DebRA better known, but it has been so much more than that; the film seems to have touched so many people."

"Jonny has achieved something amazing and I know that, wherever he is now, he will be jumping with joy at the response the film has had."

DebRA UK
DebRA UK is the national charity working on behalf of people with Dystrophic Epidermolysis Bullosa. To make a donation or to find out more visit www.debra.org.uk or telephone 01344 771961 (8.45am-5.30pm).

Teaching notes
Teachers using The Boy Whose Skin Fell Off as an educational resource can now find notes about the programme at the Learning strand of the Channel 4 website.

Relevant Channel 4 features
To find out more about death and dying, bereavement and caring at the end of life, the following health articles might be of interest.

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