A MUM is raising awareness of a premature ageing disorder after the heartbreaking loss of her baby son.
Clare Dodd, of Bebington, was told Leon had Cockayne Syndrome and would not live beyond his seventh birthday.
He died in October last year aged six-and-a-half-months – after a dream holiday with his family in Florida.
Miss Dodd said not enough people know what CS is and she wants to raise awareness of the disorder in Leon’s memory.
She said: “I never want Leon to be forgotten. When he died, people would ask how. I would say Cockayne Syndrome and they had not got a clue.”
Leon was five-and-half pounds when he was born last March and was diagnosed with CS in August.
Miss Dodd, who lives with partner Jamie Bateman, and son Thomas, two, had concerns something was wrong when Leon was in the womb.
It was thought he would be healthy but small – but after his six-week check, Leon was found to have serious problems with sight, hearing and feet. More tests found he had CS type 2.
Despite the shattering news, Miss Dodd wanted Leon to have as normal a life as possible so she went back to work as a college administrator.
They took Leon on holiday three weeks before he suddenly passed away in his sleep on October 16 last year.
Miss Dodd said: “It was so tragic because he was taken very early compared with other children. He was only six-and-a-half months.
“The awful thing was that there was nothing we could have done. There was nothing to slow it down or medication to stop it. That’s what’s so awful about CS.”
CS is characterised by growth failure, movement disorders and shortened life expectancy. Even when Leon was six-and-a-half months, he weighed just 9lb and was still in first-stage nappies.
Miss Dodd added: “Leon has inspired me just the way I think and my life has changed. I want to help other families and do all I can for them for Leon so his memory lives on.”
Miss Dodd has remained in touch with the Wirral charity, Amy And Friends, and is planning a number of fundraising events for them. Visit www.amyandfriends.org for information.