Breakthrough in campaign to save terminally ill Callum

Callum McCorriston suffers from a muscle-wasting condition known as Duchenne Muscular Dystrophy. Duchenne usually affects boys in early childhood. They generally only live into their 20s in Northern Ireland.

However, a new drug known as Translarna has been shown to slow down the progression of Duchenne in sufferers whose condition is caused by a particular genetic mutation. Callum is one of only a handful of boys in Northern Ireland who could benefit from the drug and his mother, Laura, has been campaigning for it to be made available.

The National Institute for Health and Care Excellence (NICE) has today (Friday, April 15, 2016) published new guidance recommending the drug.

Limavady Mum, Laura, said she was delighted with the decision: “Delighted that NICE have made this recommendation. Now for a swift implementation in Northern Ireland! This is a good day for Team Callum.”

Speaking before the decision was announced, she said: “The NICE guidance applies across the UK but it is still more or less the NHS England. Northern Ireland will be different, the Isle of Man will be different and Scotland will be different. Dean Sullivan, the man in charge of commissioning drugs for the Health and Social Care Board in Northern Ireland, has assured us that what NHS England does, Northern Ireland will absolutely follow suit. That’s all we know for now.

““In between all his appointments physio and medication, Callum is a typical wee boy. He loves Lego, minecraft and dinosaurs. He is thoughtful and kind, funny and loving, grumpy and stubborn.”

She described the decision on whether Callum will finally get access to the medicine as “life-changing”.