A FAMILY has launched a campaign to raise funds for research into their daughter’s rare condition, which has blighted her life.
Matilda Rose Callaghan who turns two next week, was born with Sturge Weber Syndrome, which is usually indicated by a birthmark (port wine stain) somewhere on the face, usually involving the eye and forehead.
As a baby, Matilda, had full open chest surgery, her heart rebuilt, and suffered rare congenital conditions of the food pipe. She now suffers from glaucoma and learning difficulties and has to have physiotherapy every week and surgery every month.
Matilda’s parents, Paul and Rebecca, have been busy raising money in Matilda’s name, for Alder Hey Children’s Hospital and the Ronald Macdonald House there, Wigan and Leigh Children’s Community Team and for research into the condition.
And this Sunday, October 21, Frankie and Benny’s New York Restaurant, in Leigh, will host a charity breakfast
Paul, 45, said: “We were devastated when we found out Matilda had Sturge Weber Syndrome as before she was born we hadn’t any idea anything was wrong. She had to stay in hospital for the first three months of her life and we didn’t think she would survive. Alder Hey has been fantastic as they kept her going.
“She is such a giggly girl and to us she is doing amazingly well, but she still has problems. She can roll over, but she can’t crawl, walk or talk and she has learning difficulties. She is starting treatment on her face to see if that works, but it can take up to 16 years to fully be healed. We just want to raise as much money and awareness as we can.”
People are invited to Frankie and Benny’s, in Derby Street, between 8am and 10am on Sunday and eat for free from its breakfast menu. Instead of paying, diners make a donation to the appeal, which is split between Alder Hey and the Ronald McDonald House there, Wigan and Leigh Children’s Community Team and Sturge Weber Foundation UK.