Have you ever heard of mitochondrial disease? The genetic condition means that the body doesn’t have enough energy to function properly and can cause physical, developmental and cognitive disabilities. There is currently no cure, but one Quebec family living with the disease is trying to change that.
Kevin James Reason walked hand-in-hand with his son, Liam Reason, at Terrasse Vaudreuil Beach on Wednesday, something they would have never been able to do together before.
“He had seizures for about a month. So he lost his ability to walk, he lost his ability to talk and speak and communicate,” said Reason.
Global News first met the Reason family in 2020, one year after Liam was diagnosed with POLG syndrome, a rare mutation of mitochondrial disease.
“We were told that his life expectancy is a maximum of ten years. So it was quite a shock,” said Liam’s dad.
The eight-year-old is now taking medication, as part of a trial at the Montreal Children’s Hospital. His dad believes it’s helped Liam progress.
Dr. Kenneth Myers is leading the research for the trial, which is the only one of its kind in the world.
“The goal would be to at least see a slowing of the deterioration and hopefully a return of some function,” said Myers.
Other children participating are from North and South America and even Australia. Currently, there is no effective treatment for patients with the rare condition.
“Depending on what our results are, we’ll decide if it makes sense to try to move towards the next steps, towards getting this to be something that’s available in pharmacies,” said Myers.
A vast majority of the trial funding is established by the Liam Foundation, which was started by Liam’s family to raise awareness about the disease.
“I just love the little guy, he’s just a handsome little man and he’s got a big smile,” said Liam Foundation Ambassador, Chris Nilan, who is also a former Montreal Canadien.
Nilan says he was touched by Reason’s passion.
“You know, here’s a guy who is doing everything he can to better the life of his son. And I for sure thought he could use some help,” said Nilan.
The pair collaborated to create t-shirts, with all proceeds going towards the Liam Foundation. Other upcoming fundraising events are planned for September, such as the first annual “Laughs for Liam” comedy show taking place on Saturday, September 24, at Verdun’s Beurling Academy.
It is money the charity will need as it continues to fund another year of the medical trial.
“I don’t know if I stop and think about it because there’s so much, so much work to do. I’m happy. But, you know, time is not on our side,” said Reason.
© 2022 Global News, a division of Corus Entertainment Inc.