A Limavady woman whose son is terminally ill has said her family may be left with no other option but to move to Scotland in a bid for her young son to access a potentially life-changing drug.
Laura Smith’s six-year-old son, Callum McCorriston has Duchenne Muscular Dystrophy.
Callum (pictured) could benefit from a treatment called Translarna, but the drug is not currently commissioned in Northern Ireland. Laura said while there is a trial for the treatment, Callum isn’t on it as he didn’t meet the criteria because of his age.
“All the boys in Northern Ireland who can benefit from Translarna, are on the trial and getting it, except Callum,” said Laura.
A recent application for individual funding for Callum to access Translarna was turned down and Laura said she has been asked to provide more information to prove Callum’s circumstances are “exceptional.”
The Limavady woman met health officials at Stormont yesterday to find out more about Translarna and if it would become available in Northern Ireland.
“It is so frustrating. We are thinking as a family, we have no other choice and the only option left for us is to move to Scotland, which is an absolute disgrace,” said Laura.
Laura said moving to Scotland would cause serious upheavel, but it is a price they are willing to pay as Callum’s prognosis is not good and “wasted time means wasted muscles.”
“I received an email from a man in Scotland whose son has what Callum has and he has been told the minute his son turns five he will receive the treatment. It’s the only place we can go where Callum will have a chance of getting Translarna. We don’t have any other choice. It’s really frustrating and I am angry. We would move anywhere if it improves Callum’s quality of life, but it’s also heartbreaking because everything that Callum knows and loves is here.”