And judging by the amount of publicity she’s generated with help from family and friends, she’s right on target.

Since her daughter, Eclipse, now 4, was diagnosed with the Syndrome, her family, friends and the local community have pulled together to raise funds as well as awareness. Among a list of events too long to cover in full, Sharon’s neighbour organised a fun day at the local pub, her niece raised funds at school and wrote a poem for the local paper and Sharon and five friends ran the Flora 5K Challenge last year.

Sharon’s husband, Paul, is an equally enthusiastic Foundation supporter. He has had a hand in generating celebrity support, for example from Coronation Street star, Tracy Shaw, and football greats, Kevin Keegan, David Beckham and Michael Owen.

Diagnosis

It was not until Eclipse was 18 months old that CdLS was finally diagnosed.

“I basically had a breakdown for a week,” Sharon recalls. “I searched the web for any information I could find, but I could not relate what I found to my Eclipse because physically she is among the mildest cases I have ever seen.

“That said, it’s been one battle after another since she was born with a hole in the heart. Eclipse seems to have virtually every symptom of CdLS, but in its mildest form, and that has meant she has been in and out of hospital regularly.”

Eclipse understands much of what is said to her and is sociable, but she only says the odd word. She is learning British Sign Language and continues to surprise mum and dad with her progress.

“We were told it would be a miracle if Eclipse reached her first birthday,” says Sharon, an accountant with Manchester Council’s Education department. “But she has gone from breakthrough to breakthrough. Every time she does something we didn’t think she could do – like swimming on holiday in Greece this year – it’s absolutely brilliant.”

About a year into her term as a trustee, Sharon remains determined to increase public and professional knowledge about the Syndrome. “There are children out there with CdLS who are not registered,” she says. “The more people that are registered with the Foundation, then that’s all the better for research, fundraising and political pressure.”