top of page
Writer's pictureCarey Tate

The Liam Foundation spotlights mitochondrial disease awareness in collaboration with Chris Nilan

The face of a Cunningham Pub's specialty hot sauce, a mitochondrial disease warrior, and the inspiration behind a philanthropic movement; Liam Reason is not your average 8-year-old.


At a Bell Center fundraising event, Chris "Knuckles" Nilan (right), a former Montréal Canadiens player and NHLer, learned about Liam through his father, Kevin James Reason (left). Touched by Kevin and Liam's persistence to fight Liam's mitochondrial disease, he now serves as the Liam Foundation's ambassador. Joined by Kevin for a sit-down interview with the West Island News, the two discussed mitochondrial disease awareness, and the importance of the Liam Foundation.


Liam was hospitalized in 2019 after he suffered from seizures and was diagnosed with mitochondrial disease after a month-long stay, with endless tests being performed to come to a prognosis.

PHOTO: The Liam Foundation


His father, Kevin James, describes mitochondrial disease as one that "affects the body's mitochondria, which are tiny compartments in almost every cell of the body. What that means in layman's terms is that some cells of the body do not have enough energy to function how they are supposed to."


In Liam's particular case, the disorder manifests itself through developmental delays such as autism, epilepsy, and ataxia, which result in balancing and coordination difficulties.


"When Liam was diagnosed, we were told his condition would worsen over time and that he would lose his life to this disease within ten years," shared his father, Kevin.


PHOTO: The Liam Foundation


The news was devastating, however motivating for Kevin, as he founded the Liam Foundation to dedicate his life to promoting funding and research for the disease.


The achievements the Foundation has already accomplished are monumental for mitochondrial disease visibility within the health community. It has funded an expansive and innovative medication trial in partnership with the Montréal Children's Hospital. This trial is introducing medication from Europe, which is the first of its kind and has been helping Liam and another ten children from around the world in their fight with the disease. The medication for the trial has had such a positive impact that it recently received a six-month extension from Health Canada.


That is not all the Liam Foundation hopes to achieve; they believe that a dedicated mitochondrial disease research center at the Montreal Children's Hospital is essential to fighting the disease and saving children's lives. This center would be the first of its kind in Québec, and the funding would be done in partnership with the Montreal Children's Hospital Foundation (MCHF). To donate to Liam's page on the MCHF website, visit


In partnership with the ambassador for the Foundation, Mr. Nilan, they have recently released a clothing line, with all the proceeds going directly to the Foundation. The hoodies may be purchased here: https://www.knucklesnilan.com/shop

Another fundraising initiative, the Mito Warrior clothing line in collaboration with One Sweet One Clothing Co, a West Island business, sells t-shirts and accessories dedicated to mitochondrial disease awareness: https://www.facebook.com/onesweetone/

PHOTO: The Liam Foundation


Those who wish to support the Foundation can buy customized soap, a tote bag, and even a beer glass, all dedicated to Liam: They can be purchased here: https://www.theliamfoundation.net/get-involved


Even Cunningham's Pub in Sainte-Anne-de-Bellevue had created a Louisiana-style hot sauce named after Liam to help fundraise for the Foundation.

Mr. Nilan hopes to support Kevin and all those affected by mitochondrial diseases through the Liam Foundation: "I see how hard and tirelessly Kevin works to help his son to live. I can only imagine what parents go through and how difficult it is for them and their children. We want people to jump on board to try and help. It's not an easy thing to do on your own, no question."


Mr. Nilan assisted the Foundation as Chair of the first annual Liam Foundation golf tournament, where they raised $22,442, and hope to continue their philanthropic initiatives through a Laughs for Liam comedy night hosted by Ted Bird in September. Updates for the event can be found through Kevin (https://www.facebook.com/kevinjames.reason)

and Chris's (https://www.facebook.com/KnucklesNilan30) Facebook pages.


"Little steps, but always forwards" are the encouraging words that propel the Liam Foundation forwards to continue to save the lives of Liam and all those afflicted with the disease, one day at a time.


SOURCE: The Liam Foundation




Comments


bottom of page