The mother of a terminally ill Limavady boy said she is “overwhelmed and shocked” by the community support in helping raise more than £7,000 for charity in recent months for which she has now won a national award.
Limavady boy Callum McCorriston has a form of muscular dystrophy known as Duchenne.
Callum’s mum, Laura Smith says the condition has no cure and, such is the nature of her son’s condition, the prognosis is grim. It means that for Callum, who has been taking heart medication since March, his muscles will deteriorate until he is wheelchair-bound.
Laura and her partner, Paul McCorriston started #TeamCallum in January to raise money for research into treatments. All money raised goes towards the Duchenne Research Fund.
Laura and Team Callum have been recognised for their efforts and awarded the Muscular Dystrophy UK President’s award of ‘Charity Champion’.
“I honestly can’t believe it. We started #TeamCallum’ to raise awareness of Duchenne as it’s so unheard of. All our fundraisers have been so successful because of everyone donating and helping out. I’m so honoured to receive this,” said a shocked Laura of the award she will receive via video link at the National Conference on 26th September from patron Sue Barker. “It is something I never even knew exited. I am so shocked.”
I’m so honoured to receive thisLaura Smith
Meantime, the family continue to fight for Callum, who attends Termoncanice PS in Limavady, to access the drug Translarna. His application for individual funding to access Translarna had been turned down, a decision the family hope will be reversed.
Laura said Callum, who is in P2, was fitted this week for a wheelchair, which she said was hard to accept.
“There is muscle weakness every day, but he just batters on and gets on with it,” said Laura. “Getting the wheelchair is upsetting for us. Callum is very matter of fact about it and he can’t wait to get his ‘Batman’ wheels on it. The goal for us is for Callum to be content and comfortable. We are carrying the burden.”