Memory of Jonny Kennedy, 'The Boy Whose Skin Fell Off', lives on, in new book written in his own words

Four years after his tragic death, a new book tells the full inspirational story of Jonny Kennedy, the unforgettable star of Emmy Award-winning documentary The Boy Whose Skin Fell Off.

Jonny was 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. Jonny was just 36 when he lost a final battle to skin cancer in September 2003.

Jonny Kennedy: The Story of the Boy Whose Skin Fell Off (ISBN 9780955218385) tells Jonny's heartbreaking and heartwarming story in his own words. Author Roger Stutter was Jonny Kennedy's best friend, and spent many months recording Jonny's thoughts and recollections for a memoir. Jonny died before the project could be finished, but author Roger has completed the book for his friend.

'The feedback has been outstanding,' says Roger. 'Whenever Jonny is mentioned in conversation people just light up and act as though he was their own son, like he was a part of them.'

Additional memories were provided by Jonny's mum Edna Kennedy, who also supplied family photographs, and by model and celebrity Nell McAndrew, who befriended Jonny in the final months before his death. 'Not a day goes by without Jonny being in my thoughts,' says Nell. 'I feel very fortunate to have met such a special person and I will never forget him.'

Jonny Kennedy: The Story of the Boy Whose Skin Fell Off as told to Roger Stutter, with a foreword by Nell McAndrew (ISBN 9780955218385) is published by Tonto Press and available from all good bookshops including Amazon worldwide priced UK £9.99.


Jonny Kennedy: The Story of the Boy Whose Skin Fell Off
As told to Roger Stutter, Foreword by Nell McAndrew
Tonto Press, 24 October 2007, RRP £9.99 ISBN 9780955218385
Format: Paperback, 224 pages + 16 colour photo pages
Tonto Press books are available from all good bookshops