After Simon
When Simon Lavery died from a rare metabolic disease at the age of 7, his parents were devastated.
During Simon's illness
Christine Lavery learned all about mucopolysaccharidosis (MPS disease) and its effects on both the victim and the family. To counter her grief she set up the MPS Children's Society.
Now, six years later, the society plays a leading role in funding research into a disease that affects only one in 30,000 children but which kills most of its victims before they reach their teens.
Marjorie Lofthouse visits Manchester Children's
Hospital, one of the key centres for treatment and research, and talks to families and doctors about the little progress that is being made.
Producer JOCK GALLAGHER BBC Pebble Mill
(Re-broadcast next Sunday)
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