A Limavady boy with a rare muscle wasting disease is facing a fresh delay in finding out if he will get a potentially life changing drug.
Callum McCorriston suffers from Duchenne muscular dystrophy, a condition that causes gradual but inevitable muscular deterioration, and eventually leads to paralysis and death.
A new drug - Translarna - has been shown to reduce the effects of the condition, in particular cases of Duchenne.
The six-year-old is one of just a few children in the North who could benefit from the treatment, which could prolong his life.
Callum’s mum, Laura Smith said they had fresh hope the Termoncanice P.S. pupil would get the drug following indications from the National Institute for Health and Care Excellence (NICE) - the body which decides whether new medicines should be available on the NHS - that Translarna should receive approval.
“The latest we have been told is that it has been delayed by NICE because they can’t agree on a price with the drug company. They’ve said it will be another eight weeks before they can make a final decision. That’s eight weeks from the 25th of May,” said Laura.
Laura posted a photo of her son on Facebook yesterday showing Callum in his wheelchair at his school sports day with the poignant message: “One year ago today since Callum’s request for Translarna was turned down. This photo of him was at sports day on Monday. He didn’t compete in one race. I wonder what he could have managed if he was on Translarna. That’s a year’s worth of muscle wasting that he can’t get back.”
Laura said, hopefully, once the drug is available in England, she will request to meet health minister, Michelle O’Neill.
“To be quite honest, I don’t know how much Michelle O’Neill can do now until it’s sorted with NICE, and a price is sorted and it’s available in England.
“Once that’s agreed, then I will be asking for a meeting with Michelle O’Neill. They say the normal age of decline for children with Duchenne is seven. Callum turns seven in July,” said Laura. “Every birthday is bittersweet because we’re thinking ‘is this the last birthday he’ll be able to walk?’. It’s all coming down to time, time we can’t afford to waste.”