Chronicle of a Death Foretold.
The child of the title is Jonny Kennedy, a jaunty Geordie who suffers from a rare genetic deformity that causes skin cells constantly to shed. He was born with one leg raw; over 36 years, in which the condition also prevented puberty occurring, his scalp was a thick cap of scabs, his hands and feet were useless stubs of skin and his stunted body was enclosed in a suit of dressings.
In September 2002, the bloody battle for Jonny’s epidermis climaxed in terminal cancer and he was given a year to live. The Boy Whose Skin Fell Off is a video diary of his final four months last summer. Though the diaries of the dying have been largely a literary or weblog genre, this is not untested territory for television; John Diamond and Oscar Moore both made TV documentary versions of their terminal journals. Even so, The Boy Whose Skin Fell Off sets new standards of visual frankness and verbal tone. In the opening shot of the documentary, Jonny’s dead body lies in his wheelchair in the middle of his living room. His mother and brother speak directly to the camera about their mixture of relief and regret. Now Jonny’s voice - in that cheeky, breezy north-eastern style most known on television in The Likely Lads and Auf Weidersehen, Pet - begins a posthumous commentary: “I’ll tell you the story of my life and death.”
