The mum of a Limavady boy who suffers from a rare muscle disease campaigning for a potentially life changing drug for her son is taking her campaign to Stormont.
Laura Smith’s five-year-old son, Callum McCorriston has Duchenne Muscular Dystrophy. Callum could benefit from a treatment called Translarna. However, Laura said such is the nature of the condition time can’t be wasted. Laura said Callum’s application for the treatment, Translarna, is still being processed.
“I’m hoping to hear soon it has been approved. Duchenne is a severe progressive muscle wasting condition. Translarna would effectively slow down the progression, but we need access to it,” Laura told the ‘Journal’. “Monday’s meeting with the All Party Parliamentary Group is to discuss recommendations from the McCollum report which asks for better standards of care in N. Ireland. Boys in England can expect to reach late 20s, boys on Denmark late 30s but, in N.Ireland, it’s late teens all down to standards of care.”
Laura hopes to ask officials from the Health and Social Care Board about the availability of Translarna locally, adding: “I don’t think we’ll get an answer on Monday but, at least a time frame for an answer.”