The family of a young Limavady boy who suffers from Duchenne Muscular Dystrophy have seen his condition improve after finally getting access to a new drug.
Duchenne MD is a severe form of the genetic condition, which gradually causes the muscles to weaken.
The family of Callum McCorriston (7) gained access to Translarna, a drug that helps treat the condition, following a two-year fight.
Callum’s mother Laura Smith said that their fight has involved “a lot of trips to Stormont, and a lot of fighting and arguing with the Health and Social Care Board.”
She said that although local councillors and former Health Minister Jim Wells had been supportive and helpful, Edwin Poots refused to meet with them as Health Minister.
They also had problems with the Health and Social Care Board (HSCB), who they felt were not willing to work with the family to help them gain access to the drug.
“We’ve had to fight every step of the way and reach out to different people and ask them for help,” Laura said.
“It was just so frustrating that it was the Health and Social Care Board that were basically standing in the way. The words we kept hearing from them was cost-effectiveness. That, after a while, started to grate on me, because we’re talking about a child’s life here. Who can put a price on that?”
Around a month after Callum (pictured) first started taking Translarna in August, he was able to pedal a bike for the first time, after spotting one during a physio appointment.
“Trikes and bikes are something we tend to avoid with Callum, because you can see the disappointment on his face when he can’t manage it,” Laura said.
Yet while Laura was talking to the physio, Callum got on the trike and began pedalling around the room.
Laura said he had a look of “sheer joy on his face, because he’d never been able to do that before.”
She said Callum suffers from less fatigue as a result of the drug and they’re hoping to see further improvements as time goes on.
“It’s not a cure and we know that, but we’re hoping that it halts the progression of the condition,” Laura said.
The family are currently campaigning for seven-year-old Finley Hesketh to have access to Translarna.
Finley, who lives on the Isle of Man, is currently the only child in Britain with Duchenne MD who doesn’t have access to the drug.
The Manx government has said they ‘can’t justify’ the cost of the treatment, which Laura believes is just like her family’s fight.
“It really tugs at my heartstrings, because I know exactly what they’re going through. We had that fight for two years.”
“How can it be fair in this day and age, that you’re putting money ahead the quality of a child’s life?”
The family also continue to raise money that goes towards research for a cure for all with Duchenne MD and have raised almost £18,000 in two years of fundraising.
Their latest event was a 5K zombie run at The Jungle NI in Magherafelt, where Callum’s daddy, uncle and sister took on an obstacle course, while being chased by zombies to raise funds.
The family are hoping to get at least 100 people to take part in a skydiving event at the Wild Geese centre in Garvagh in February.
To sign up for skydiving, or to donate to Callum’s cause visit the Team Callum Facebook page.
If you have a story or want to send a photo or video to us please contact the Derry Now editorial team. Between 9am and 5pm Monday to Sunday please call 028 7129 6600 for Derry City stories or 028 7774 3970 for County Derry stories. Between 5pm and midnight please call or text 07825 711978. Or you can email john.gill@derrynews.net at any time.