The Boy Whose Skin Fell Off ( Jonny Kennedy) 3, 5

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 rescreening the film and revisiting 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 upc br, br,