- Title: The Boy Whose Skin Fell Off
- Date: 25th March 2004
- Summary: 36-year-old Jonny Kennedy was an extraordinary man with a terrible condition - Dystrophic Epidermolysis Bullosa (EB) - which means 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. Jonny decided to work with filmmaker Patrick Collerton to document his last months (he died in September 2003) in an uplifting, confounding and provocatively humorous story of a singular man. Not shying away from the grim reality of a life with EB the film is, though, a celebration of a life lived to the full. "I like to see it as the skin is like Velcro, so the hooks are missing," says Jonny in inimitable style. "So, any knocks or severe friction such as constant wanking just doesn't go well with the condition because it pulls the skin off and then you're knackered." Whether chatting up Nell McAndrew at a charity do, choosing a coffin with an intriguing baked-bean can motif, or deciding to leave home and live on his own, Jonny displays a devilish humour, an acute intelligence and an unwillingness to suffer his fate, or fools, gladly. Jonny is frank about his feelings on his upcoming death and practical about the arrangements. "Is it going to be painful? How long will it last? Am I going to drag on and be a dribbling old fart? ...Being in bed and I can't do nothing. All these sort of things. I'd rather just go to bed, go to sleep, pop me clogs, over with. "People, even in this day and age, are still frightened about death. They won't talk about it and it's such a shame because it's part of life. So, why not organise it like you would organise an anniversary or a birthday? Let's get it right." The film features moving interviews with his friends and family, including his mother Edna who has been his life-long carer and faces the prospect of Jonny's death with disarming mixed feelings. "When Jonny was born I didn't see him for two days basically because I think they thought he would die because they didn't know such a terrible lot about the condition," she says. "I sometimes look back and wonder how I've managed, to be quite honest, but you do. If you can imagine picking up a new-born baby, to be fed, and every time you pick that baby up you're blistering it." Jonny's father Frank never came to terms with the condition and tried to hide Jonny away. He attempted several home remedies, including saltwater baths and exposing the sores to the air. Edna was left to care for Jonny and to come to terms with the constant pain he suffered. Though Edna loved and cherished Jonny she feels that the pain suffered by someone with such an extreme form of EB is just too much. "If I had been in a more modern situation [with a pre-natal test for EB] and found myself pregnant, I would have aborted the baby and not felt guilty about it as some people do, having seen what these children have to go through," says Edna. Jonny agrees: "I was asked one time if I would carry on with a birth knowing that an EB child would be born and I said 'No', I would terminate; it's not just a disabled child that's being born, it's disabling a whole family." And Edna reflects on Jonny's impending death: "I know when the end does come, if I'm still here, I'll have that many emotions going through me because, number one, it'll be a relief for Jonny, a release, but it'll be a relief for me as well, so I'm going to feel that. Then I'm going to feel terribly guilty, feeling relieved that he's not there. And on top of all of that I'm going to miss him desperately." Jonny spent many years working with DebRA, the charity that raises money to fund research into the condition and the day before his death he realised a personal ambition by visiting Downing Street and securing Cherie Blair's support for the organisation.
- Description:The extraordinary life and death of Jonny "Cotton Wool Boy" Kennedy. He's just like you and me... except his skin keeps falling off. Now,as he prepares to die,he presents a pithy and unsentimental guide to dying,whist exploring the science and psychology of living with one of the world's most intriguing and puzzling skin conditions.
- Broadcaster:Channel 4
- Collection: Channel 4
- Genre:Documentary and Factual
- Producer:Yipp Films Ltd.
- Programme Episode:Episode 1
- Transmission Date:25/03/2004
- Rights:Worldwide
- Decade: 2000s