The Boy Whose Skin Fell Off (Jonny Kennedy) 5/5

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.

Category:

Education

Tags:

• Jonny
• Kennedy
• boy
• whose
• skin
• fell
• off
• Dystrophic
• Epidermolysis
• Bullosa
• DEBRA
• cancer
• EB

[potatoperson5]

I cried at the end when he passed on, not because I was sad that he died, but because I was sad that the world had lost such a wonderful and inspirational person. Thank you Jonny

[shimmerbrite]

You sir were not worthless, a burden or a waste of space....god made you perfect on the inside...in mind and spirit...and as you said, he just gave you a dodgy case.

[bobanddavid90]

Just donated money to DebRA. Anyone else?

[3210mfg]

WOW! He was an incredible person! 

[quangluu96]

Wow, wonderful man. RIP, even though he lived in pain, he respect and love life.

[naserian100]

What a wonderfull person he was! I saw this documentary 2 years ago and indeed its a life changing.I couldnt even cry or feel bad about him ,he honored life and spirituality but he had the strength to honor death as a part of life .His body was weak but a spirit like his is never worthless ,there are so many people with a strong body but with a shallow and weak spirit Souls like his come here to teach us a lesson.

Jonny thank you for coming to share your wisdom with us.

See you soon.

[ghmj2607]

my grandmother has cancer, first it was from the lungs, and then it shifted to the spinal cord, anyway, my grandma knows that she doesn't want to live any longer, as she has no purpose for living life on this earth, and that her time is done, she stops eating from time to time, because she feels like she is ruining all of her children's lives, she feels like it's time for her to reincarnate to something good, or reincarnate and do her "homework".

[TheFoxSummoner]

Godbless you Johnny may you now and forever rest in peace and be up there with Freddie :,)

[Samikines]

what a beautiful soul... i would like to meet him in his new form... He is such an inspiration...

[Normpercy]

just like Johny said its a very shallow person who dosent believe theres somthing after we die. God bless you my friend

[truvelocity]

I don't believe in an afterlife, but I do believe that what Jonny Kennedy has done is incredible for future generations. He has left a legacy. His persistence gave us all lessons. We've got one shot, folks. Jonny's story is an example of making a difference. Thank you to Jonny's family and friends and charity creators and charity givers to create a cure for EB.

[Slyraider100]

R.I.P Jonny, You are a legend