Jonny Kennedy - The Story of The Boy Whose Skin Fell Off

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Jonny Kennedy
The Story of The Boy Whose Skin Fell Off
As told to Roger Stutter
Foreword by Nell McAndrew
Tonto Press 2007, ISBN 9780955218385, £9.99

'I feel very fortunate to have met such a special person and I will never forget him.'
- Nell McAndrew

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Jonny Kennedy was the star of the unforgettable Emmy award-winning documentary The Boy Whose Skin Fell Off. He was an extraordinary character determined to live an ordinary life despite being born with the agonising condition Dystrophic Epidermolysis Bullosa (EB), which meant that his skin could literally fall off at the slightest touch. It was a daily struggle he faced with courage, determination and wit, offering inspiration to millions around the world. Tragically, Jonny was just 36 when he lost a final battle to skin cancer. This is his moving, honest and uplifting story.

Roger Stutter was one of Jonny Kennedy's closest friends, and spent many months recording Jonny's innermost thoughts and recollections for this extraordinary memoir. Additional memories are provided by Edna Kennedy, Jonny's mum, and Nell McAndrew, who befriended Jonny in the final months before his death. It is hoped the book will raise awareness for Jonny's condition and for the charities that continue his work.