Kevin Reason knows where he comes from.
“I grew up in the Verdun district of Montreal,” shares the fortysomething, married father of two over the phone. “There were a couple of strong communities there at that time – the French and the Irish. Both communities are still there, and both are very proud, family-oriented peoples who are happy to help their neighbours out in difficult times. I mean, we’re Irish – that’s what we do, right? My own family were always involved in parades, sports associations, and other Irish expat activities. We celebrated St. Patrick’s Day for, like, a month every year.”
Like many of his heritage, Kevin has visited the land of his ancestors.
“I have been over a few times, yes. 2015 was the last time we were there. My son Liam was with us on that trip, and he loved it. We toured Ireland and Northern Ireland. My wife has roots in the Dublin area. She also has some Scottish heritage.”
In 2019, Liam was diagnosed with mitochondrial disorder.
“I remember it like it was yesterday,” recalls Kevin. “Liam always had trouble walking because of his autism, but one day his leg locked and jerked, and he just fell. He was having a seizure. So, we brought him to the hospital, and he was there for about a month before we got the official diagnosis. The doctors gave him anywhere from three months to ten years to live, and that is still the case today.”
One wellness website defines Mitochondrial disease, or mitochondrial disorder, as “a group of disorders that affect the mitochondria, which are tiny compartments that are present in almost every cell of the body. The mitochondria’s main function is to produce energy. More mitochondria are needed to make more energy, particularly in high-energy demand organs such as the heart, muscles, and brain. When the number or function of mitochondria in the cell are disrupted, less energy is produced and organ dysfunction results. Depending on which cells within the body have disrupted mitochondria, different symptoms may occur. Mitochondrial disease can cause a vast array of health concerns, including fatigue, weakness, metabolic strokes, seizures, cardiomyopathy, arrhythmias, developmental or cognitive disabilities, diabetes mellitus, impairment of hearing, vision, growth, liver, gastrointestinal, or kidney function, and more. These symptoms can present at any age from infancy up until late adulthood.”
“I was super angry for about four months,” recalls Kevin. “I just didn’t care about anything – it was a bad, bad time of my life. And then I thought, “hey, we have to do something here.” So, I went up to the Montreal Children’s Hospital, met with the doctors, and they told me about a trial medication in Europe that had been tested on rats. Liam was the first one to try these drugs in North America. He has been on it for over a year now and we have already noticed big changes – making eye contact, trying to speak, walking better, more aware of his surroundings.
“The medication is working, although we are aware that it is just buying us time until a cure can be found.”
Other families around the world have been watching.
“We have four (families) from Brazil and the U.S. involved with the trials, three from Canada, one from Australia, and another from China. I am in touch with them and, so far, the results have been very positive.”
Liam’s situation has since drawn the attention of those looking to help.
“I met Chris (“Knuckles”) Nilan in October of 2019 at a Montreal Canadiens alumni event. He was one of my hockey childhood heroes. I couldn’t believe that he was sitting at our table, let alone that he would give me his phone number.”
“Knuckles” took to Liam right away.
“He’s an amazing little guy,” says the former big-league enforcer who played for 15 seasons in the National Hockey League. “As I have told many people, there is something about Liam that steals your heart, and he certainly has stolen mine.
“No parent wants to be in the situation that Kevin is in,” continues Nilan. “He has worked tirelessly to raise money to not only find a cure but pay also to for medications and treatments for Liam and for other families whose children suffer from this same devastating disease. His efforts and drive to help his son are truly awe-inspiring. I was compelled to help in any way I possibly could, and I promised him I would do just that.”
Nilan has since set-up his Heart of a Warrior campaign via his website to help raise both funds and awareness about mitochondrial disorder.
“Right now, we need all the help we can get,” says Kevin. “Chris’ support has made a world of difference, and he has been instrumental in getting others involved. I mean, we’re Irish – that’s what we do, right?”