The Boy Whose Skin Fell Off (Jonny Kennedy) 4/5

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

[ronvins]

How many of your shut your eyes and pictured what he was describing?

[MrFrosty1178]

thumbs up if you whould have stay with him if you were hiis father

[TheFionstein]

if I new I was going to die. I would like to be alive at my own funeral. I would like to see what people have to say about me and what they liked/disliked. I think that once you see that, everyone can die at peace.

[mitchellloomis]

My skin disorder does not in anyway compare 2 this, but it is very discomforting when it does breakout. I was diagnosed with Darier's Disease/Hailey Hailey. Kudo's 2 the Mother who stood by his side through all of this

[MrPierce333]

i wish i could meet this kids and tell him how sorry i feel for him

[MsCourteau]

@ronvins i closed my eyes and thought of Johnny soaring away

[fluteplayer]

His brother is a great example, what a sibling can and should be and to never take life for granted!!!

[emaresea]

His father sounds like a major asshole.

[k92091]

i shut my eyes and cried

[Xeno25]

This story is a true testament of a mother's undying love for her children.

[accordingtolive]

This is great for anyone scared of dying, or dealing with the death of a loved one.

[BarrockYomamma2010]

R.I.P. Dude