First transmitted in March 2004, this deeply moving documentary achieved the rare distinction of being a genuine television event in a multichannel age. It also stimulated great public interest in the crippling genetic condition, Dystrophic Epidermolysis Bullosa. The protagonist, Jonny Kennedy, suffered from the disease, meaning that his skin literally fell off, leaving him covered in sores. And yet Jonny insisted on living his life to the full and in great humour, not least when insisting that he narrate the finished documentary from his grave.
Patrick Collerton
Eric Harwood
Nick Fenton
Richard Ranken
Kit Haigh
COMMENTKnowing he was shortly to die, Jonny rarely appears anything other than cheerful in the film, as we see him living out fantasies such as flying a plane, and meeting his object of desire, the model Nell McAndrew. The surge in financial interest in charities committed to combating the disease after transmission is a fine tribute to Jonny's happy spirit. And yet this serves only to make its impact all the more upsetting, as we come to see the lives of Jonny and his Mother (and lifelong carer), Edna, as two lives wasted for no other reason than the lottery of genetics. As he says of his birth, "It's not just a disabled child that's being born. It's disabling a whole family"
The sympathetic presentation of Jonny is at odds with many similar 'extreme illness' documentaries before and since The Boy Whose Skin Fell Off. He retains his dignity, and it is this that most marks the film out from similar works in the genre. Part of this dignity is that the viewer is given room to judge Jonny as a human being, not an angel. For example, is his religious spiritualism a convenient escape from the harsh reality of a painful and incurable illness? In the end, though, we are with Jonny all the way, and it is to be greatly admired that he exploited television's potential for mass appeal and generating celebrity for a very good cause.
The Boy Whose Skin Fell Off won multiple awards, including BAFTAs, an Emmy and a Grierson Award.
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