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DMD Life Art and Me by Ian A Griffiths (view source)
Revision as of 10:26, 15 June 2011
, 10:26, 15 June 2011no edit summary
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Ian Griffiths suffers from Duchenne Muscular Dystrophy - a form of muscular dystrophy which causes muscle degeneration. It begins in early childhood with difficulty in walking and progresses to cause problems with breathing and all the voluntary muscles. Ultimately it's fatal. Men and boys – it's linked to the X chromosome so affects only males (it seems that I'm in error about this -see the comment from Eunice Watson belowAND Ian's just told me that he knows of three girls who are affected) – with the disease have a life expectancy of between the late teens and mid-twenties. Ian's in his mid-twenties now and he's written ''DMD Life: art and me'' to explain what it really feels like to live with the disease. And when I say 'really feels like' I do mean that. Ian doesn't gloss over ''anything''.
When I picked the book up I thought I might not like the format. Ian takes his life year by year and devotes a chapter to each, with additional chapters for important or traumatic events. In actual fact the format is perfect as it allows you to appreciate how the disease progressed, how Ian felt and how his family coped with what was happening ''to them all''. From the initial shock of finding that your child has a fatal condition to the realisation that you're going to be your son's primary carer throughout his life – you'll realise what Ian's mother and father are going through as well as Ian's feelings because Ian is very open about what they have done for him and how grateful he is.