A BRAVE six-year-old girl is set to donate her bone marrow to save the life of her three-year-old brother.
Grace Sainsbury, of Beckett Road, Worthing, has put herself forward for donating her bone marrow to help her brother William – and has been found to be a perfect match.
William suffers from a rare, life-limiting disease called mucopolysaccharidosis, which causes a protein deficiency. Sufferers of the incurable condition usually do not live past their teens.
To prevent William’s vital organs from failing, William’s parents must administer enzymes weekly through one of William’s veins.
If Grace’s bone marrow transplant is successful, William should be able to produce his own enzymes, increasing his life expectancy to well into his thirties.
Mum to William and Grace, Karen said she and husband Justin are extremely proud of both their children.
“We never coerced Grace into being tested for donation,” she said. “She was adamant she wanted to do it. We are also extremely lucky that Grace was a match, because there is only a one-in-four chance she would be.”
The transplant date is set for the new year.
Karen, 33, added: “Grace absolutely adores her brother, they are inseparable. We are so proud of her because it is difficult to see her brother not be able to do certain things.
“She also sometimes gets upset when the other children at school make fun of her because her brother is a bit different. It’s hard for her because she doesn’t get as much attention as her brother, but she never complains.”
As a result of his condition, William has learning difficulties, stiff joints and also has a curvature of the spine. Since being diagnosed with the disease 18 months ago, William’s sight is deteriorating and he has recently undergone two separate operations to drain a build-up of fluid on his brain and improve his mobility.
Despite his condition, Karen said William is a cheeky, happy three-year-old.
“He is a lovely, chirpy little boy,” she said. “People ask us how we get through it but we take it a day at a time. And if I’m honest, I wouldn’t have it any other way. We are on this amazing journey and we have met some amazing people because of it.”
A fun day has been organised to raise £10,000, so that Justin and Karen may be able to pay for accommodation and transport for William’s future operations.
The event will feature face painting, Christmas crafts and children’s games. Visitors will also have the opportunity to win some generous raffle prizes, donated by local businesses.
The fun day will be held at West Tarring young people’s club, High Street, Tarring, on Saturday, November 26, from 11am to 5pm. For more information on William and the fun day, visit William’s fund-raising page.