The boy whose skin fell off

The boy of the title is Jonny Kennedy, a  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 he is constantly enclosed in a suit of dressings and bandages

In september 2002, Jonny was diagnosed with terminal cancer and was given a year to live. The documentury is a video diary of his final four months.  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 - "I'll tell you the story of my life and death."

 Jonny visits an undertaker to select his coffin. He cheerfully tests the wood against his feet and tells the funeral director to stencil the label of a can of Heinz baked beans on the outside of the pine. "It doesn't mean anything, but it will get them talking."

 Lunching with his oldest school friend, he begins to improvise a fantasy about the television crew, having done their four months' filming, becoming impatient for him to die. He even imagines the cameraman leaning over him and creepily asking: "Are you feeling sleepy, son?" When asked in an interview about his illness, he explains: "The skin's like Velcro but the hinges are missing. So any knocks or severe friction - like constant wanking - doesn't go well with the condition."

 When Nell McAndrew bursts into tears after meeting him at a charity event, her own perfect skin making the encounter seem even more distressing, Jonny and his schoolmate reflect on how "the old sob-story works every time".

The risk of these scenes is that they make death seem easy and suggest that Jonny conquered suffering through comedy. The John Diamond documentaries were probably a little too reassuring about the reality of dying young. So producer-director Patrick Collinson is justified in including gruesome scenes of the dressings being changed and Jonny near the end, helpless and exhausted after insisting on flying to London to meet Cherie Blair at an event for a charity that seeks to find the gene that denied him a normal existence.

One of the reasons that Senator John Edwards faltered in the recent US primaries was that he patted the head of a wheelchair-using voter, who angrily told him that he needed to learn "disability etiquette". We need to be careful of simply patting Jonny Kennedy on the head while watching and writing about this film. His last testament stands as an advance in television's treatment of death, and a tribute to an original, witty, bloody-minded man who was unlucky in everything except his personality and his family.