Saturday, August 23, 2008

The Boy Whose Skin Fell Off

Jonny Kennedy had 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 agonizing sores and leading to a final struggle with 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, that was an uplifting, confounding and the 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. 2004

This is a moving documentary, well worth the effort to locate. It should be available relatively soon from DEBRA (dystrophic epidermolysis bullosa reasearch association)

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