Yearly Archives: 2025

Jayda is the proud mom of a remarkable 12-year-old boy living with mitochondrial disease. Decklan was diagnosed with Leigh syndrome at the age of five — a diagnosis that, as Jayda describes, “rocked our family’s world.” At the time, they didn’t even know what mitochondrial disease was.

Despite the devastating diagnosis, Decklan continues to defy the odds and thrive. “Life is not easy for him,” Jayda says, “but he never lets his disease stop him from trying everything.” Since day one, their family’s goal has been to give Decklan a full life — making memories every chance they have.

Jayda appreciates that MitoCanada is so invested in supporting families affected by mito. “From information about new studies and testing, to facts about mito diseases, to sharing stories about those that are affected, to fun contests and giveaways, I really appreciate it all,” she says.

Although she had heard of MitoCanada after Decklan’s diagnosis, it wasn’t until she met Richard and Megan MacDonald — some of MitoCanada’s biggest ambassadors! — at a booth during the Regina Queen City Marathon that she felt truly connected. “After meeting them, I became connected to others in the community,” says Jayda. “Being a part of this community has given us lifelong friends and connections who truly understand what we’re going through and support us unconditionally.”

Jayda has also been an incredible champion for MitoCanada. “Anytime I can bring awareness to MitoCanada and the amazing work the organization does, it makes me proud,” she says. “The more awareness we get, the more chance we’ll be able to find cures for our children and loved ones down the road.”

Jayda’s message to others in the MitoCommunity is simple: “I hope everyone who lives with mito, or is a caregiver of someone who is, takes care of themselves and truly lives every day to its fullest.”

We’re grateful to Jayda Back and family for being such an inspiring part of our MitoCommunity.

Tanner was the baby who completed Leeanne and Patrick Wilson’s family. After a full-term pregnancy and normal delivery, they brought him home to join his big brother, Nolan. But as Tanner grew, they began to notice he wasn’t hitting his developmental milestones. He was slower to walk and talk and had mild eye abnormalities.

Like many parents, Leeanne and Patrick sought answers through countless medical visits. After a fall sent Tanner to the ER, an MRI was completed and they received a devastating diagnosis: Leigh syndrome, a rare mitochondrial disease. “We had never even heard of it,” says Leeanne. “When we googled it, we read that Tanner could have as little as two months or up to five years to live to the fullest. That was very hard to unread — and impossible to accept.”

Determined to learn more, Patrick began researching and came across Dr. Aneal Khan in Calgary, who agreed to see Tanner. The family travelled there from their home in Saskatoon. There, after additional tests, they learned that Tanner had Complex 1 Deficiency with Leigh symptoms, caused by his MT-ND6 gene. “We travelled home from Calgary that first time feeling a little less heavy, having more information about Tanner, but still wondering how we would navigate this ‘new normal,’” says Leeanne.

It was Dr. Khan who suggested they connect with MitoCanada and attend an upcoming conference. “That was when I found my tribe,” Leeanne shares. “A group of like-minded, like-confused, hopeful, and questioning people who understood what we were going through and could help our family navigate these rough waters called mito.”

Through MitoCanada, the Wilsons discovered they were not alone. “This group helped us realize we weren’t isolated,” says Leeanne. “Sometimes the support took the shape of a physical aid for Tanner or just a compassionate shoulder to cry on. We were surrounded by other parents all hoping, wishing, and praying for one another and for their own child.”

Today, Tanner is 12 years old and continues to amaze his family with his strength and spirit. “He is a strong warrior, a determined young man who, despite the challenges of mito, approaches life with remarkable resilience,” Leeanne says. “His spirit shines through his daily battles, teaching us invaluable lessons about courage, perseverance, and the true meaning of life.”

Wanting to raise awareness, the Wilsons organized their first Mito Glow Walk in Saskatoon during World Mitochondrial Disease Week. Friends, family, and members of the community dressed in bright green and glowing gear gathered to walk for Tanner and all the mito warriors who have fought or continue to fight this disease. The Wilsons plan to make it an annual tradition.

Leeanne says the support and resources MitoCanada provides have been invaluable. “MitoCanada continues its mission to bring awareness to a disease most have never heard of,” she says. “We’re so grateful for this inspiring and supportive community.”

Leeanne, Tanner, and the entire Wilson family inspire us with their strength, love, and determination. We’re grateful to have them as such an important part of our MitoCommunity.

Join us in fuelling the next 15 years. Every donation helps us continue this vital work and create a future where no one faces mito alone.
Be part of the journey. Donate today:

Louise began experiencing symptoms of mitochondrial disorder as a child — unexplained muscle fatigue and weakness. Her teachers misunderstood, and a gym teacher even told Louise’s mother that “Louise isn’t trying.” But her mother knew better. Louise’s attitude was always about doing her best. Eventually, she was referred to a neurology clinic in Montreal, and at age 18, she was finally diagnosed with mitochondrial disorder. At age 27, Louise was treated at McMaster Hospital. It’s at that time that her older sister Rita, who had been misdiagnosed with cerebral palsy at birth, was also diagnosed with mitochondrial disorder.

It took another 18 years to determine that both sisters had the TRMT5 deficiency. There were only two other known cases globally.

Living with mito hasn’t been easy, but Louise remains deeply committed to finding light and purpose. Her two adult children are unaffected by the disease. Louise is grateful for the unwavering support of all her family and friends.

Louise has never stopped giving back — whether it’s volunteering with Trillium Health Partners and Special Olympics Canada, sharing her lived experience with health care teams, or serving as a dedicated mitoAmbassador for MitoCanada. She also stays active with aquafit, which she calls her “medicine,” helping her manage mito and feel her best.

In 2015, Louise founded Walk N’ Roll 4 Mito in Mississauga, Ont., after participating in another walk for mito, where she realized she was the only person with mito walking the route. “When I finally finished, I was 40 minutes behind everyone else, and all the finishers were still there cheering me on,” she says. “The encouragement was so inspiring!” That moment sparked something big. Walk N’ Roll 4 Mito has since grown into a powerful, nationwide movement — and 2025 marks its 10th anniversary.

Louise now dedicates each walk to her sister Rita, who lost her battle with mito, and to all the lives lost too soon to mitochondrial disorder. “I want to show that doing something is better than nothing, and the more you push yourself, the better you feel,” she says. “Exercise is medicine, especially with mito disorders. Even though I can’t walk far anymore, I do what I can.”

Through her advocacy with MitoCanada, Louise hopes to see the organization continue building its strong foundation — expanding community support even further, and finding new ways to help improve the daily life for those living with mito.

She’s also passionate about raising awareness and funds for research. “It would have made a difference in my life and my sister Rita’s,” she says. “We may not have a cure yet — and I’m too old to benefit from mitochondrial transplantation — but the science is getting there.”

“I know I have mito,” Louise adds, “but mito doesn’t have me!”

Join us in fuelling the next 15 years. Every donation helps us continue this vital work and create a future where no one faces mito alone.
Be part of the journey. Support Louise’s MitoJourney today:

Linda’s journey with mitochondrial disease began in the late 1970s, when her son Scott started experiencing unexplained symptoms. At just 4 years old, Scott would sometimes get sick after swimming, biking, or gym class. As he grew older, his symptoms worsened — including headaches, failure to gain weight, seizures, and strokes that left him blind. At age 11, Scott underwent surgery for a brain tumour that was found to be non-cancerous. Sadly, he passed away shortly after a muscle biopsy was conducted.⁠
⁠
At the time, mitochondrial disease was virtually unknown. “In 1985, Scott’s doctor shared an article with me about MELAS, a rare mitochondrial condition,” Linda recalls. “He said he only knew of three cases — one in BC and two in New York.”⁠
⁠
Determined to raise awareness and honour her son’s legacy, Linda created @Scott’s Ride in 2012 — cycling with her daughter Debbie from Keremeos, BC to Toronto, ON to support mito research and awareness. “I had to do something,” she says. “There were so many people who didn’t even know what mitochondrial disease was.”
⁠
Since then, Linda and Debbie have organized rides, spin events, and community outreach — including awareness efforts in Kamloops, BC (including securing proclamations for World Mitochondrial Disease Week), spin events in Penticton, and participation in the Granfondo in Penticton. ⁠
⁠
What inspires her most about MitoCanada? “It gives people hope,” says Linda. “It connects you with others so you know you’re not alone.”

Linda’s message to the MitoCommunity? “Never give up. Keep searching for answers,” she says. “The sooner mito is diagnosed, the sooner it can be treated. More research and awareness brings us closer to a cure.”

Join us in fuelling the next 15 years. Every donation helps us continue this vital work and create a future where no one faces mito alone.
Be part of the journey. Donate today: