The boy whose skin fell off

The Boy Whose Skin Fell Off, Channel 4, Thursday 21st May at 10pm

Jonny Kennedy was born with recessive dystrophic epidermolysis bullosa (EB), he spent much of his life in pain but he had an incredible attitude and was determined to do what he could to raise awareness about EB, and to raise funds for DEBRA UK. He invited Producer and Director, Patrick Collerton to film the last few months of his life and the result was the Emmy Award winning Channel 4 documentary, first aired in 2004. 

It's incredibly moving as it shows the brutal reality of living and dying with severe EB.

On receiving the news that Channel 4 are airing the documentary again, Producer Patrick commented:

Raising awareness for DEBRA, the EB charity, was a driving force in Jonny Kennedy's life, and through the making of the documentary, The Boy Whose Skin Fell Off. Please watch, donate and raise awareness to bring his goal of curing EB that little bit closer.

Jonny's impact and his celebrity friends

Jonny's bravery and determination got him in front of well-known personalities, including Nell McAndrew and Cherie Blair, he made a big impression on both of them, in fact Nell was so taken by Jonny and his mission that she even attended his house warming party. Nell told us:

Really doesn’t seem that long ago that I met Jonny. His positive attitude, sense of humour, just a genuinely lovely person who had to go through so much pain and discomfort his whole life. Heartbreaking. Will never forget Jonny.

Cherie Blair also fondly remembers Jonny, who sadly passed away very shortly after meeting her:

I met Jonny Kennedy several years ago, at Downing Street, I remember because his sense of humour and his determination to help fight EB, even though he was losing his own battle, left a big impression on me. He asked that we support DEBRA UK and we did - they are dedicated to supporting people living with this dreadful condition whilst aiming to find a cure. Please support them if you can.

Lord Rupert Redesdale, a friend of Jonny's, features in the documentary helping Jonny to prepare for his funeral - their friendship and sense of humour brings a smile in what is otherwise a tragic story.

Please click below if you would like to donate in Jonny's memory.