The mum of a Limavady boy who has an incurable muscle wasting condition has spoken of her overwhelming thanks to everyone who has helped the family’s fundraising and awareness campaign for Muscular Dystrophy.
Laura Smith’s son Callum McCorriston has Duchenne muscular dystrophy. Since his diagnosis, Laura and her family, including dad Paul, have campaigned to raise money to find a cure for the condition. They have attended meetings at Stormont and are currently waiting on news from NHS England on whether they will proceed with the assessment of a breakthrough drug - Translarna - Laura claims would prolong her son’s life.
“My hope was that the NHS would make the drug available on prescription in England, and that Northern Ireland would have followed but, as far as I can tell the process has been put on hold,” she said. “A meeting is due with the decision makers next week, so hopefully we will find out then.”
In the meantime, the family have been touched by fundraisers organised locally, including a Christmas jumper day at Callum’s school in Limavady, Termoncanice PS.
The family have also taken on their own fundraiser to raise funds. Callum’s dad Paul McCorriston has taken on the challenge to skydive on February 28.
“I sneakily signed Paul up for it because he had mentioned about doing something. He’s very excited,” said Laura, who said all the money raised goes to the Muscular Dystropohy Foundation.
Laura says Callum is back at school after the Christmas break, and is keeping well, but faces another lengthy list of appointments in coming weeks.
“That’s normal for him though, and he is so, so good. Bless him. He just gets on with it,” said Laura. “The community in general, and our family and friends have been brilliant. They’re all just so good.”
Laura added: “Although Translarna is a treatment, it’s not a cure. Our mission as parents is ultimately to raise money so the researchers and scientists can work to find a cure for Duchenne.” To donate go to https://www.justgiving.com/Laura-Smith96/