Changes

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.

What surprised me is how little medical assistance he has had other than when there was a crisis. Occasionally I wondered if intervention at an earlier date might not have prolonged his life expectancy or improved the quality of his life at each stage of the illness. For this reason I really do believe that it should be read by everyone who ''might'' be in a position of caring for someone who suffers from DMD. Staff on general wards in hospital really didn't seem to know how to cope with his needs. He should have had better dietary advice as soon as swallowing became a problem. ''Ian'' should have been listened to rather than people assuming that ''they'' knew what was best for him.