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.
4 comments:
The documentary was brilliantly put together so that you were laughing more than feeling sad. The style of documentary was interesting: ideas and thoughts were often explored with wide scenic shots of the sky and countryside that illustrated how Jonny felt about a particular aspect of his condition. Yet the most effective shots were still those of Jonny at his most vulnerable, for example the change of dressing where you see just how severe an effect EB has had on Jonny's physique. All in all, a really insightful documentary that is really worth seeing.
The scene where his bandages were changed was heartbreaking. Jonny weeping in agony, his back red raw, cursing at his mother (and promptly apologising), whilst revealing his pre-pubescent physique was simply awful. Powerful stuff.
I'm sorry I missed this. The title put me off -- it sounded like another of those overhyped but underwhelming shockTV exercises in voyeurism. Hopefully it will be on again.
I'm not surprised - it was possibly let down by its disrespectful and gory title. Taz has it on DVD if you are interested. Arm yourself with tissues though!
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