A Limavady boy with a rare form of Muscular Dystrophy is set to start treatment which his family hope will enhance his quality of life.
Laura Smith found out last month her son, Callum McCorriston, would have access to Translarna, ending the Limavady family’s two-year campaign to get the medicine. He will start the treatment on Thursday (August 18).
Health Minister, Michelle O’Neill, confirmed the drug, which has been described as a “real lifeline” for children like Callum, who has Duchenne Muscular Dystrophy, would be funded by the health service, despite its expense.
Laura said: “It will be administered three times a day; morning, afternoon and evening and, hopefully, it won’t be a bad taste and Callum will take it willingly otherwise we will have to syringe it into him. It’ll be delivered to the house every four weeks, so we don’t have to worry about prescriptions and appointments so, please God, it’s all going in the right direction.
“It still means he will have to be monitored to check his kidney and renal function, his blood pressure and height and weight and make sure his body is tolerating it and what the impact is.
“It feels very surreal but we are hoping to see a difference in his mobility. When he started on the steroids he seemed to have an extra surge of energy so, we are hoping he experiences that with Translarna. I suppose we are hoping for, at the very least, no change and at the very most, improvement; that would be fantastic but we’ll take what we can get.”
Laura said Callum is guaranteed access to the drug for five years as long as he is able to walk.
Laura posted on Facebook: “Can I please ask for continued prayers that Callum’s body tolerates it and that we notice positive changes. So happy to have it, but yet so worried about giving it to him. Callum’s just asked me ‘mummy is it to keep my legs working?’ I hope so son, with every fibre of my being.”