Biography - The Boy Whose Skin Fell Off

Jonny Kennedy is a man with a lot to do. Hes got just four months to move home, befriend Nell McAndrew, fly a plane, visit Downing Street - and plan his own funeral. 36-year-old Jonny is an extraordinary man with a terrible condition - Dystrophic Epidermolysis Bullosa (EB) - which means his skin literally falls off at the slightest touch, leaving his body covered in agonising sores and leading to a final fight against skin cancer. In 2003, Jonny decided to work with filmmaker Patrick Collerton to document his last months in an uplifting, confounding and provocatively humorous story of a singular man.Although it never shies away from the grim reality of his illness, this moving film is a celebration of a life lived to the full. Whether chatting up Nell McAndrew or choosing a coffin with a surprising baked-bean can motif, Jonny displays a devilish humour, an acute intelligence and an unwillingness to suffer his fate, or fools, gladly.When it was first shown, The Boy Whose Skin Fell Off captivated nearly five million viewers and helped to raise £500,000 for the EB charity DebRA.Jonny Kennedy died in 2003 aged 36.