The mum of a Limavady boy who suffers from a rare muscle disease has said the resignation of health minister Jim Wells “has left us in limbo”.
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 met with Jim Wells last year to discuss her son’s case, and how he could benefit from Translarna. She said she had a positive meeting with the then health minister, explaining how he could help in order for her son to access the treatment.
However, following on from Jim Wells’ resignation, Laura said she is left wondering “where we stand now”.
“I met with Mr Wells in October to talk about Callum getting access to Translarna, something he fully supported,” said Laura.
“He also attended the all party group on Muscular Dystrophy, and has since allowed for another four neuromuscular advisors.
“Will this all still stand when he leaves? Our application for independent funding is being processed.
“God willing the right decision will be made, and it will improve Callum’s quality and quantity of life.”
Laura hopes whoever succeeds Jim Wells as the new health minister will not ignore the progress made locally.
To the decision makers, Laura made this appeal.
“All our hopes are pinned on this,” said Laura.
“You have the ability to change this. It is not a cure, I understand that, but it’s all we have.
“In my darkest hours I have planned his funeral, I have wept so many tears I could fill an ocean. I am literally begging you to help my son. Don’t let the first ever treatment for Duchenne be denied. Don’t let our son die.”