A Limavady mum says she has been given fresh hope at securing a life-enhancing drug for her terminaly ill little boy after she was told it had been turned down.
Limavady boy Callum McCorriston has a form of muscular dystrophy known as Duchenne.
Time is crucial, but this is definitely a move forward and, hopefully, it will make a difference.Laura Smith
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 said she has been told Callum is unlikely to live beyond his early twenties.
Callum, a pupil at Termoncanice PS, is amongst a small group of Duchenne sufferers in the UK who could benefit from a drug called Translarna. She said five boys are currently on a trial for the treatment, but Callum doesn’t meet the criteria because of his age.
Laura, who has been campaigning for Callum to get access to the drug, was gutted last month when she was told the Individual Funding Request (IFR) for Callum to access Translarna had been turned down.
Laura said the decision had denied Callum “his basic human right, the right to live”.
However, Sinn Fein MLA Maeve McLaughlin has given Callum’s family fresh hope after she raised Callum’s case directly with the Health and Social Care Board (HSCB), and the Health Minister.
Ms McLaughlin, who is Chair of Stormont’s Health Committee has received a letter from Simon Hamilton stating the HSCB has advised him “it has not rejected this Individual Funding Request aplication”; that “the application submitted by the Belfast Trust did not provide substantive information in support of Callum’s clinical exceptionality and therefore the IFR Panel was not in a position to support the funding request”.
The letter goes on to state: “The Belfast Trust has been advised that if they wish to provide additional information this will be considered by the Panel.”
Ms McLaughlin hopes the application will be assessed again, and she pledged to continue to do what she can to get “the right result”, and get Callum access to the drug Translarna.
The assemblywoman said there are a number of children who are part of a trial using Translarna, yet Callum and his family continue to face hurdles.
Callum’s mum, Laura said news the application could be re-assessed is “a move forward”.
Laura said it is a “race against time” for her son, and the more time waiting on getting access to Translarna is “wasted muscles” for Callum.
“Even in this good weather Callum is trying to be like every other five-year-old, but we can see he is losing ability and losing muscle mass. Time is crucial,” she said, “but this is definitely a move forward and, hopefully, it will make a difference.”