Quebec non-profit raising funds for rare disease goes international
Posted September 25, 2024 12:35 pm.
Last Updated November 19, 2024 12:01 pm.
A Quebecer is taking the battle to find a cure for mitochondrial disease, international.
Last November CityNews brought you the story of Kevin Reason, a dad from Rosemere, Quebec, on a mission to find a cure for his son Liam, who has mitochondrial disease.
The disease is made up of different disorders that affect the body’s mitochondria, which are tiny compartments in almost every cell of the body. What that means is that some cells of the body do not have enough energy to function how they’re supposed to.
For Liam, the mitochondrial disorder exists in his central nervous system. It results in developmental delays, autism, epilepsy and ataxia.
Kevin’s mission has now gone international. The Liam Foundation has officially partnered with the World Mitochondria Society and the Liam Foundation is opening up a chapter of the Liam Foundation in Boston. They’ll be working with George Washington University as well as with doctors in Brazil.
Kevin Reason explains: “In 2019 Liam had seizures for five weeks straight, 24 hours a day.
“Where he lost his ability to walk and talk. But in 2020 when we started to work on this trial medication, Liam’s been on it now for three years and I’m happy to say he does walk again.
“So this medication is doing something. As a parent I see it, but the good news is medically we also know something’s going on.”
Liam’s younger sister Molly is only two years old, yet when Liam walks, she’ll make sure she holds his hand so he doesn’t fall.
Kevin explains, “You have Owen, he knows how to make the medication and he learned that at five years old.
“He said just in case, which was really cool.
“And my oldest daughter Emily who’s a big part of the foundation, she’s 25. She works with me on the day to day and loves her a little Liam.
“So yeah, it definitely affects the whole family.”
McGill University Health Centre released a clinical paper that changed the course of Kevin’s advocacy.
Kevin explains, “This went around the world very quickly and McGill had, they used in the title an effective treatment.
“So this goes all over the world and a lot of eyes were on it.
“So I was actually contacted by a doctor at George Washington University. We had a quick chat about the trial and we quickly became friends to be honest with you.
“And at one point I will be going down there to do a conference with her with other doctors and talk everything mitochondrial disease.”
Worldwide, an estimated one in 5,000 people has a genetic mitochondrial disease.
Kevin explains, “We have that trial here in Montreal and we have a lot of U.S. families, children coming into Montreal.
“And I have a lot of U.S. organizations that contact me and want to help. So I feel it’s time and we need to get to the U.S.”
Kevin shares, “There’s a doctor out in Brazil that wants to work with me to get maybe the trial going there or at least work together and seek out treatments, we’ll see what happens.”
The passionate advocate for all things mitochondrial disease reveals, “It started with saving Liam and it quickly became to save all the kids around the world with this disease.”
