The Boy Whos Skin Fell Off
Jonny Kennedy died in 2003 aged 36. He had a terrible genetic condition called Dystrophic Epidermolysis Bullosa (EB) -- which meant 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.
In his last months Jonny decided to work with filmmaker Patrick Collerton to document his life and death, and the result was a film, first broadcast in March 2004, that was an uplifting, confounding and provocatively humorous story of a singular man. Not shying away from the grim reality of EB, the film was also a celebration of a life lived to the full.
When it was first shown, The Boy Whose Skin Fell Off captivated nearly 5 million viewers and helped to raise £500,000 for the EB charity DebRA. Channel 4 is re-screening the film and re-visiting Jonny's family to see how they have come to terms with his death and the public's reaction to the film.
Jonny was frank about his feelings on his upcoming death and practical about the arrangements. The film featured moving interviews with his friends and family, including his mother Edna, who had been his life-long carer and faced the prospect of Jonny's death with disarming mixed feelings, torn between relief for Jonny and knowing that she would miss him desperately.
Part 1 - http://www.youtube.com/watch?v=Dmahlc6n9_A&feature=related
Part 2 - http://www.youtube.com/watch?v=1V0PW_61xKs&feature=related
Part 3 - http://www.youtube.com/watch?v=XXJARXpvctw&feature=related
Part 4 - http://www.youtube.com/watch?v=Fgk1vDCrgEc&feature=related
Part 5 - http://www.youtube.com/watch?v=3HuOfUuHgFM
this is the saddest thing i have ever seen, but it made me appreiate my life more than i ever have before. it's really unfair how people as nice as Jonny have to go through shit as tough as this.
i can say i hope you will be worth what i gave up.
[8]
awe that was so sad.
but he looks like hes only a kid.
i've mαde mistαkes in my life , i've let people tαke αdvαntαge of me & i αccpeted wαy less thαn i deserve but i've leαrned from my bαd choices & even though there αre somethings i cαn never get bαck, i'll know better next time. ♥
aww thats soo sads:(
Remember you are valuable
Remember you are repairable
Remember you matter
Remember they don't.♥
So fucking inspiring. He is incredible.
MY BEST FRIEND SHWAYZE SAID "OH HE'S JUST BEIN' SKEET SKEET"
i know. honestly, he has the most positive outlook on life, it's so brilliant.
it's really sad though. he planned out his own funeral and everything, and he still wasn't upset or scared, he just wanted to make life as good as posible.
RIP
i can say i hope you will be worth what i gave up.
[8]
That is SO sad
I dont even know you but I got the time...<3Jeremiah<3
Aw, poor guy!
So sad!
But his outlook on life is amazing! Makes me think more positive!
'Cause if falling for you girl is crazy,
Then I'm going out of my mind. <3