In pictures: Life with muscular dystrophy            Last hospital 
stayPerspectives
on muscle disease: life in pictures, is a new exhibition curated by the
Muscular Dystrophy Campaign at the Novas Contemporary Urban Centre in
London.Lesley
 McIntyre’s exhibition A Time of Her Life focuses on her daughter, Molly, who 
died at the age of 14 after being born with a rare muscle wasting disease. This 
picture was taken a few months before her death."We'd always taken each 
day as it came but she was very angry that she was dying," Lesley says. At 
the hairdresser"She used to say to me: I've got a brain that works but a 
body that doesn't. But she loved life - right to the last. Just days before she 
died she was rollicking with laughter to Eddie Izzard."It was so important 
to me that Molly had treats as any normal child.She loved getting her hair done 
- and flicking through
 Hello at the same time."Out campaigningLesley fought hard to get Molly 
into a mainstream school."I went to court to get her in - they wouldn't 
have her at first.Molly loved school. She was a very bright child and made 
friends from day one.Daisy
and Esther were with her to the end - I remember them turfing me out of
Molly's room so they could gossip, just before she died." "She was 
really socially engaged. Here she is campaigning against education cuts in the 
1990s."Let's go fly a kite"Many couples fall apart when something is 
wrong with their child, and my marriage failed.Molly and I spent many happy 
holidays at a cottage I part-owned in Wales. It may not look very high but this 
was about the furthest we got the kite off the ground - we were 
thrilled!"Globetrotting"Here's Molly on Long Island. She went to 
Italy, Spain, Norway. She loved travelling."Children with these diseases 
are rarely given the opportunity to take part in life, but when given the 
chance, they
 confound expectations." On the beach"This is a beach I used to play 
on as a child, and I am so glad to have a picture of Molly here too."No
human is responsible for their genetic make-up, and I wish we could all
make sure that every child has a place where they feel valued."Text and 
pictures: Lesley McIntyreThe
exhibition will be on display at the Novas Contemporary Urban Centre,
in Southwark London, until Saturday 2 February 2008.(BBC)Group [EMAIL 
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