On Sunday night I was watching Channel 4's '50 Greatest Documentaries' (fascinating - number one was 49up which I blogged a week or two ago) and whilst it stirred up interest in a number of films, it showed one in particular directly after the programme, called 'The Boy Whose Skin Fell Off'.
It tells the story of Jonny Kennedy, a 36 year old man trapped in the body of a boy whose skin detaches from his body with slight trauma, the increased skin turnover eventually giving rise to cancerous change. This condition is known as 'Dystrophic Epidermolysis Bullosa (EB)', and the film charts Jonny's last four months leading up to the send-off he is planning for himself. In the time remaining to him, Jonny promotes his charity Debra and we learn a little of what life is like for a sufferer of this condition.
The documentary is very saddening and raw at times, leading one to question how detached a documentary film-maker ought to be in such a scenario. What makes such a depressing topic so watchable is Jonny's cheeky sense of humour, and his nonchalant attitude towards death. But the film achieves its main aim of raising awareness of the condition, with over half a million pounds worth of donations having been received since the film was first aired in March 2004.