Have you ever heard of mitochondrial disease? The genetic condition means that the body does not have enough energy to function properly and can lead to physical, developmental and cognitive disabilities. There is currently no cure, but a 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 never could have done together before.
“He had seizures for about a month. So he lost his ability to walk, he lost his ability to talk, talk and communicate,” Reason said.
Global News first caught up with the Reason family in 2020, a year after Liam was diagnosed with POLG syndrome, a rare mitochondrial disease mutation.
A Quebec family raises awareness and funds a sick child with a rare disease
“We were told that his life expectancy is a maximum of ten years. So it was quite a shock,” Liam’s father said.
The eight-year-old is now taking medication, as part of a trial at the Montreal Children’s Hospital. His dad thinks it 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 slowdown in deterioration and hopefully a return of some functions,” Myers said.
Other participating children come from North and South America and even Australia. Currently, there is no effective treatment for patients with this rare disease.
“Based on our results, we’ll decide if it makes sense to try to take the next steps, to make it something that’s available in pharmacies,” Myers said.
MitoCanada – Support for Families Struggling with Mitochondrial Disease
A large majority of the funding for the trials is established by the Liam Foundation, which was started by Liam’s family to raise awareness of the disease.
“I love the little guy, he’s just a handsome little guy and he has a big smile,” said Liam Foundation Ambassador Chris Nilan, who is also a former Montreal Canadiens.
Nilan says he was touched by Reason’s passion.
“You know, here’s a guy doing everything he can to make his son’s life better. And I definitely thought he would need help,” Nilan said.
The couple collaborated to create t-shirts, with all proceeds going to the Liam Foundation. Other upcoming fundraisers are planned for September, such as the first annual comedy show “Laughs for Liam” which will take place on Saturday, September 24 at the Beurling Academy in Verdun.
It’s 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, so much work to do. I am happy. But, you know, time is not on our side,” Reason said.
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