Rewarding: Trustee Lorraine Hawthorne.

Lorraine was ‘roped in’ as a Trustee at the Stratford Conference in 1997 – and she’s been enjoying the role ever since.

“It doesn’t take a great deal of time,” she says, “but it’s incredibly rewarding being able to help others through your own experience. The CdLS Foundation is such a supportive group. I want to make sure it carries on by being there for people.”

In particular, Lorraine is there for families in her home county, Staffordshire. She lives in Sheyd Green and works full-time as a sales advisor at Dorothy Perkins in Stoke on Trent.

Lorraine and husband, Dave, have three daughters and one son. Their youngest daughter, Charlotte, 11, is severely affected by CdLS: among other symptoms, she has no forearms and is unable to speak.

At 4, Lorraine says Charlotte was the first child in Staffordshire to have an operation to correct ptosis (inability to open eyelids properly).

“The consultant was hesitant about doing the operation,” says Lorraine, “but I persisted. With the help and support of the paediatric nurses, I persuaded him to carry out the operation. Within months Charlotte was sitting up and walking.”

Support

Perseverance, battling against professionals, getting people on your side and a good support network are essential if you are the parent of a CdLS child says Lorraine.

And she’s more than happy to provide a shoulder to lean on.

“We’re all in the same situation,” she says. “I like to think I can help others either from my own personal experience or by finding someone else who can advise.”