The mother of a Limavady boy who finally gained access to a new drug that could potentially prolong her son’s life says she has noticed an improvement in his condition.
Callum McCorriston suffers from Duchenne Muscular Dystrophy, a condition that causes gradual but inevitable muscular deterioration and eventually leads to paralysis and death.
Callum’s parents, Paul McCorriston and Laura Smith campaigned for the last five years to get Callum the drug - Translarna - the first ever drug to target an underlying genetic cause of a form of muscular dystrophy.
After the drug was approved in England, Laura and Paul were “beyond delighted” when, in July, Health minister, Michelle O’Neill, annouced eligible patients in the North, including Callum, would have access to the drug.
Callum started taking the drug soon after Michelle O’Neill’s announcement.
“At the beginning we had a few stomach issues. The drug comes in granule form, which has to be added to 30mls of water,” explained Laura.
Callum takes five doses a day, and isn’t overly keen on it, says Laura.
However, the family have noticed an improvement in Callum’s stamina and were overjoyed at some of the things he’s now able to do - such as pedal a bike for the very first time.
“He is doing so well, and our fight was definitely worth it,” said Laura.
The family are now campaigning to help another child from the Isle of Man they say is the only boy in Europe eligible, but not receiving the drug.
Laura is training as a peer support volunteer for newly-diagnosed families and she’s been in touch with a couple of parents, one whose son can also benefit from Translarna.
“Tanslarna is not a cure, which is why we will continue to fundraise.
“I remain eternally grateful to all #teamcallum supporters who gave me the strength to keep going when I thought I couldn’t,” said Laura, who explained the Team Callum have raised more than £17,000 for research.
Their latest fundraiser was a ‘5km Zombie Run’ with Paul, daughter Caitlin and Laura’s brother, Daniel, and “the main man, Callum, cheering them on”.
“I couldn’t be prouder of my wee family. I am so truly blessed,” added Laura.