The resignation of Health Minister Jim Wells has left the campaign to secure medicine for a Limavady boy with a terminal illness uncertain.
A campaign to secure a new, potentially life-changing medicine for Limavady boy Callum McCorriston, who suffers from a condition known as Duchenne Muscular Dystrophy, has been ongoing for some time.
In my darkest hours I have planned his funeral. I’m grieving for Callum even though he’s with meLaura Smith
Operating under the slogan #TeamCallum, the campaign has been thrown into uncertainty following the Ministers’ resignation.
The Health Minister stepped down earlier this week after he made controversial comments about homosexuality.
Callum’s mother, Laura, told the Sentinel that while she did not agree with Mr Wells’ comments, he had been a good supporter of the campaign to secure the medicine Translarna for her son.
She said: “His resignation leaves me wondering where we stand now.
“I met with Mr Wells in October to talk about Callum getting access to Translarna. Something he fully supported. He also attended the All Party Parliamentary Group on Muscular Dystrophy and has since allowed for another four neuromuscular advisors.
“Will this all still stand when he leaves? Our application for individual funding is being processed. God willing the right decision will be made and it will improve Callums quality and quantity of life.
“To the decision makers: Do you know how it feels to be told your child has a terminal condition?
“Do you know how it feels for your heart to break into a million pieces?
“Do you have any idea how hard it is to put a smile on your face everyday?
“Do you understand how Callum must feel with so many appointments? How he must feel when he sees others doing things he can’t? Basic things like walking to the shop, riding a bike, playing on climbing frames?
“You have the ability to change this. It is not a cure, I understand that. But it’s all we have. All our hopes are pinned on this. In my darkest hours I have planned his funeral, I have wept so many tears I could fill an ocean.
“I’m grieving for Callum even though he’s with me. I get angry at he unfairness of it. I hurt when he hurts. I wipe his tears and rub his tired, sore legs.
It’s happening more and more often that he cannot sleep because of pain. He has started heart medication. This scares me more than anything. My son’s heart is affected at 5 years old. How can it be that in 2015 we have to fight for a treatment. Please, make the right choice.”