KateMurray

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So far Kate Murray has created 13 blog entries.

Swing for a Cure Charity Golf Event

Swing for a Cure Charity Golf Tournament

Presented by the Hamilton-Brantford Building Trades Council

Get ready to tee off for a great cause! Join us on Thursday, July 10th, for the 8th annual Swing for a Cure charity golf event hosted by the Hamilton-Brantford Building Trades (HBBT) Council.

This fun-filled day of golf brings together community members, industry professionals, and generous supporters to raise critical funds for mitochondrial disease research, support programs, and awareness initiatives. Whether you’re a seasoned golfer or just out to enjoy the sunshine and camaraderie, your participation helps drive real impact for individuals and families living with mitochondrial disease.

We are deeply grateful to the Hamilton-Brantford Building-Construction Trades Council and all tournament participants for their incredible ongoing support, which has raised over $80,000 for MitoCanada’s mission.

Event Highlights

  • 18 holes of golf at a premier course

  • Team contests and exciting hole challenges

  • Prizes, raffles, and silent auction

  • Delicious meals and refreshments

  • Great company, all for a great cause

We invite you to gather your friends, colleagues, or crew and register your foursome early—spots fill up fast!

Together, we can drive change and bring hope to the mito community—one swing at a time.

Save the date: Thursday, July 10th
Stay tuned for more details, including location, registration links, and sponsorship opportunities.

For individual or foursome registration details, please select the button below to review. You can also print off the registration form and email it to event organizers to secure your spot.

Swing for a Cure. Register today:

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15 Stories for 15 Years: Blaine and Evan Penny

MitoCanada is celebrating 15 years of impact, resilience, and progress, and we’re kicking off our 15 Stories for 15 Years series with the story that started it all: Blaine and Evan Penny.

In 2008, Blaine and his family’s world changed forever when his four-year-old son, Evan, went in for what was supposed to be a routine appendectomy. Instead of waking up as expected, Evan fell into a coma. Five days later, he regained consciousness, but he had changed forever, becoming non-verbal and needing to be tube-fed. After months of uncertainty, testing led to a probable mitochondrial disease diagnosis. Read their full story on our website: https://mitocanada.org/evan-penny/

Determined to turn heartbreak into action, Blaine channelled his endurance as a marathoner into raising awareness and funds for mito research.

In 2010, he ran a gruelling 100-kilometre ultra-marathon through Alberta’s mountains, marking the start of what would become MitoCanada — a national charity dedicated to supporting Canadians impacted by mitochondrial disease.

Today, we honour Blaine and Evan’s story — the spark that ignited 15 years of progress, community, and hope.

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:

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15 Stories for 15 Years: Meet Marsha Crossman

As we celebrate 15 years of MitoCanada, we’re sharing the inspiring stories of individuals who make this community so special. Today, we highlight Marsha Crossman — a passionate mito advocate, patient, and long-time supporter.

Marsha’s journey began in 2015, when she was diagnosed with McArdle’s disease, a secondary type of mito. “After years of tests and seeing a variety of specialists, I was finally diagnosed at an out-of-province neuromuscular clinic,” she says. “Having a diagnosis helped me put the puzzle pieces of my symptoms together and move forward.”

From that moment on, Marsha didn’t just find answers — she found community, purpose, and the power of connection.

“What inspires me the most to be involved with MitoCanada is the charity’s desire to truly make a difference in the lives of people living with mitochondrial disease,” she says. “MitoCanada has included me in several initiatives, from reviewing research grant applications to attending seminars. They understand that research and support are the best ways to help manage this disease.”

Marsha has been an impactful part of the MitoCommunity for many years. “Being part of the MitoCanada family has made a huge impact on my life,” she shares. “The connections I’ve made with other patients going through the same experiences as me have been meaningful. Whether it was attending an event or organizing one as the Team MitoCanada lead for Saskatchewan, the people have made all the difference.”

Through her connection with MitoCanada, Marsha is most proud of sharing her story. “Sharing my story wasn’t easy at first, but MitoCanada helped me realize that my story has the ability to inspire and educate others,” she says. “I didn’t imagine the impact it would have. By sharing my experience, I was able to connect families with resources in our province and with MitoCanada for trusted support.”

Marsha is also very proud of her family’s involvement with MitoCanada. Her husband, Jon Paradowski, famously ran across Canada virtually (7,269 kms!) in 2021 to celebrate MitoCanada’s 10th anniversary and raise awareness for mito. (Read more about that here: https://mitocanada.org/get-involved/historicalevents/jons-virtual-run-across-canada/)

Marsha’s message to the MitoCommunity is pure and simple: “Love yourself, even when your body is failing you,” she says. “Stay positive with courage and a grateful heart. And always remember to ask for help — you are not alone.”

Marsha’s story is a powerful reminder of the strength within our MitoCommunity. Read her full journey here: https://mitocanada.org/marsha-crossman/

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:

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15 Stories for 15 Years: Meet Savitha, Ajay and Anakha

15 Stories for 15 Years: Meet Savitha, Ajay and Anakha

As we celebrate 15 years of MitoCanada, we’re sharing the inspiring stories of individuals who make this community so special. Today, we highlight Savitha, Ajay and their daughter, Anakha — a resilient, determined, and joyful 10-year-old who is defying expectations every day.

Anakha’s journey began like any other. “She had an uncomplicated birth, and for nine months, everything seemed fine,” Savitha recalls. But after a flight, Anakha began losing all the skills she had developed — within six weeks, she could no longer crawl, babble, or even hold up her head.

Doctors at SickKids in Toronto suspected mitochondrial disease but told her parents there was no hope. “They told us to go home, make her comfortable, and prepare for the imminent worst,” Savitha says. But Anakha’s mother saw something else — signs of healing. “Magically, within a month of her initial regression, Anakha’s eyes started tracking light again and her fists slowly unclenched,” says Savitha. “Her first medical team did not believe me, and decided they were dealing with a desperate mother, looking for any sign of hope. But I saw the signs of healing and refused to give up on Anakha.”

Determined to fight for Anakha’s future, Savitha sought out every resource she could find. She connected with MitoCanada and sent Anakha’s dad, Ajay, to attend an event, where he connected with other mito families. She learned about Dr. Tarnopolsky and the latest research on mitochondrial disease. She advocated for Anakha to start on the mito cocktail before receiving an official genetic diagnosis and built a care strategy that prioritized movement, nutrition, rest, and avoiding infections. “Our family started living by the principles that I believe ultimately saved Anakha’s life – avoid stressors, avoid infection, emphasize exercise and movement, ensure she eats and drinks properly, protect sleep, and rest,” says Savitha. “Our family was sanitizing and masking in public years before the COVID-19 pandemic.”

Against all odds, Anakha recovered skills doctors said she never would.

Now 10 years old, Anakha is thriving. “She has regained some of her vision, uses a manual wheelchair, and is a wickedly funny and intelligent fifth-grader who loves musicals, blind bags (surprise toys), reading horror novels, swimming, cheerleading, spas, and dogs,” says Savitha. Her genetic condition, multiple mitochondrial dysfunction syndrome type 3 (MMDS3), also known as IBA57 deficiency, is ultra-rare — at the time of her diagnosis, only three cases had been reported worldwide.

Today, through literature reviews and social media, Savitha has tracked about 70 children globally with the same condition, some of whom have followed similar journeys of loss and recovery. “Currently, we’re in contact with three other families: a young boy in Serbia, a young man in New York, and a young woman in Norway who is a lawyer!” says Savitha. “These families experienced the same initial regression of skills as infants, but the children slowly regained many of their skills, through therapy, hard work, parental determination, and time. I’ve also been in touch with three families who lost their children in infancy. IBA57 deficiency is a spectrum.”

Anakha has faced naysayers and disbelievers her entire life. “Whether it’s the doctor who refused to believe she was tracking light again and refused to refer Anakha to ophthalmology (Anakha went from a 1 to an 8.5 out of 10 on the Cortical Visual Impairment scale, 10 being normal vision), the speech-language therapist who told us Anakha could not understand us and would never be capable of expressive language (she was wrong and apologized to us – Anakha is incredibly verbose and loves to sing and act!), or the educators who struggle with presuming competence in the face of disability (Anakha is incredibly intelligent, and when her IEP accommodations are appropriately administered, she can show that to the world!), living life with disabilities and a life-threatening illness is always going to be a fight,” says Savitha.

Savitha and her family’s journey with MitoCanada has been one of connection and support. “When we first started our journey, resources in Canada were so limited,” she says. “But within a few years, MitoCanada grew exponentially — providing education, raising awareness, fundraising, and connecting families like ours so we didn’t feel so alone.”

Savitha now plays an active role in the community, participating in the annual Walk N’ Roll 4 Mito and encouraging her family and friends to get involved. Ajay even sits on MitoCanada’s mitoScholars committee, helping to support students impacted by mito.

Savitha’s message to the MitoCommunity? “Mitochondrial disease is a tough, multi-system, complex disorder,” says Savitha. “We, whether adult patients or caregivers, are required to juggle multiple health specialists, therapies, and conflicting advice, all while dealing with exhaustion, pain, and grief. This is a tough gig. But what I want the MitoCommunity to remember is to always keep fighting. There is no guarantee of any sort of outcome, but we must always try, and fight for ourselves, and fight for our children. Stay connected, don’t be afraid to reach out for help, and never, ever, give up.”

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:

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15 Stories for 15 Years: Meet Celia McGrath and Frankie

As we celebrate 15 years of MitoCanada, we’re sharing the stories of those who make this community so special. Today, we honour Celia McGrath and her son, Frankie. Frankie was born in April 2012. “Frankie was such a happy and active baby,” says Celia. “We went to baby yoga, music classes, swimming, baby salsa dancing classes (that was more for the parents, haha), storytime at the library, and, of course, our daily walks. Frankie had the biggest cheeks and was always smiling! We did so much with him in the short amount of time he had on this earth.”

Just after his first birthday, Celia noticed Frankie’s eyes were very yellow. A hospital visit led to devastating news — he had acute liver failure, likely present since birth. Despite no previous signs or symptoms, all of Frankie’s major organs began shutting down. “The doctors at Stollery Children’s Hospital in Edmonton told us his mitochondria were failing, and that a liver transplant wouldn’t save his life,” says Celia. “We had never even heard of mitochondrial disease. Frankie was a very happy and healthy baby — this was a complete shock.”

In just three weeks, Frankie was gone. He passed away on May 14, 2013, at Vancouver Canuck Place.

In the depths of grief, Celia’s mother searched for support and found MitoCanada. Through the charity, Celia connected with another mom who had lost her child to mito. “We talked on the phone, and I cried through most of the conversation, but this mom was so caring and she was someone I could connect with and who understood my pain,” she says. “My mom was able to connect with a woman whose grandson passed away from mito. MitoCanada is a very supportive and inspiring community.”

MitoCanada became a place of connection, support, and inspiration for Celia and her family. “What inspires me about MitoCanada is how hard they work to spread awareness and support families,” says Celia. “When I first connected with MitoCanada in 2013, the charity was only about three years old. To see how far it has come is unbelievable! It’s hard to put into words, but it’s sad that so many more families have needed to find this community. No one should have to go through losing a loved one to mito or live with this disease, but we’re lucky that MitoCanada exists.”

Wanting to honour Frankie, Celia and her family launched The Frankie G Pub Night (@frankiegspubnight) in 2014. “We wanted to host a night where all of our family and friends could come together in memory of Frankie while raising awareness and funds for MitoCanada,” she says. “We had no idea what we were doing, but we knew it could become something special.”

Now an annual event, the fundraiser brings together 150-200 people to raise awareness and funds for MitoCanada. “I wish I didn’t have to host The Frankie G Pub Night,” Celia admits. “I wish more than anything that Frankie was still here with me. But hosting the pub night has helped me through my grief.” The 9th annual event will take place on July 19, 2025.

Through it all, Celia is proud of the love and support that surrounds her. “Frankie still lives on in our memories, and to be able to honour him with The Frankie G Pub Night, where so many people come together to show their love and support, means more than words can say,” she says. “My family and friends have helped me through many years of heartache and sadness, and having their love and support means more to me than anything.”

Her message to the MitoCommunity? “Keep sharing stories of your loved ones. They will never be forgotten.”

Celia’s story is heartbreaking and inspiring. We’re grateful to have her as such an integral part of our MitoCommunity.

Be part of the journey. Donate today:

To learn more about Frankie G Pub Night, taking place on Saturday, July 19th, at The Golden Parrots Pub, click below:

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Remembering Charlie: The Leitis family shares their story

Before they knew what mitochondrial disease was, Dani and Ivars Leitis had what they considered to be the perfect family. Their daughter, Riley, was thrilled to have become a big sister at the age of seven, and baby Charlie (born June 4, 2021) was reaching all his milestones. “Everything in our lives was going well,” says Ivars. “We didn’t have everything, but we had it all.”

“We had no clue that Charlie was silently fighting a battle that would lead to a devastating loss,” says Dani.

Charlie was big on snuggles and loved being held. “His favourite place was intently watching the world over Ivars’ left shoulder,” says Dani. “He had the greatest smile and laugh and big beautiful eyes. He was always watching what was going on around him.”

Charlie loved to make music, hum along to songs, play with his toys and the family’s dog Dusty, and scoot down the hall to his big sister’s room to see her. “The way Charlie’s face lit up for Riley was filled with pure love,” says Dani. Riley loved to give him piggyback rides, which were guaranteed to make him smile or laugh.

While Charlie was a happy, playful toddler, he faced challenges from the start. “He was very demanding in his first year as he was extremely fussy,” says Dani. “He struggled with breastfeeding. He seemed to get tired, as though it was a lot of work, and we ended up having to supplement with formula. We noticed he sometimes made a gurgling noise when he was breathing, but we were told that he just had underdeveloped vocal cords because he was premature. He had a ‘slight nystagmus’ we were told, which is involuntary eye movement. He also had what we thought were breath-holding spells. He’d cry so hard he’d stop breathing.

As it continued to progress, he’d go completely stiff – arching his back, his hands and toes would curl up and he looked like all the muscles in his body were seizing.” A visit to the family doctor sent Charlie into one of these spells. Witnessing it in person, the doctor became concerned that Charlie may be having seizures and referred him to a pediatrician. This would be the first time a pediatrician would dismiss concerns without any testing.

“Charlie started to seem a lot better after his first birthday,” says Dani. “The gurgle was gone and the breath-holding spells had nearly stopped. He continued meeting his milestones. But somewhere after the 16-month mark, we started noticing that Charlie was losing weight. He had been walking with support since 10 months but wouldn’t progress.  He also wasn’t using his words anymore. It happened so quickly.” The family doctor once again put in referrals for pediatricians, but it wouldn’t be until 19 months – January 2023, with desperate pleas from the family doctor – that two more pediatricians would finally accept Charlie as a patient.

The family’s concerns were mostly dismissed by the first pediatrician they saw and they were told to check back in four months. Unfortunately, Charlie didn’t have four months.

Unsatisfied, the family moved on to a third pediatrician. She ordered blood work, tests, and referrals, including a dietitian and an occupational therapist (OT) who would support the family at home. The OT noticed that Charlie slouched a lot in his highchair, causing fatigue, and that his oral muscles were taking a long time to fire at the beginning of a meal. They switched from a highchair to a booster chair, added dietitian-provided supplements, and incorporated special foods to wake up his muscles, along with unlimited amounts of his favourite foods – chicken nuggets, chocolate chip panettone, and chocolate milk – to increase calories. Charlie started gaining weight quickly. “He was even napping less,” says Dani. “We started noticing him figuring out new ways to move and engage with things and people.”

The Leitis’ optimism was high until March of 2023, when Charlie came down with COVID. Although he appeared to have recovered from the virus, he had a lingering cough and the gurgling was back. After a particularly difficult morning with his cough, the Leitis family took Charlie to McMaster Children’s Hospital for the first time. Charlie was prescribed a steroid inhaler in addition to a rescue inhaler he was already on, and they were sent on their way.

Charlie appeared to start recovering and relief was setting in until late one evening he started choking more on his fluids at dinner. That night, Dani and Ivars were woken multiple times to Charlie screaming in his sleep, much like he was having a night terror – something his sister had experienced as a toddler.

The next morning, Charlie was not himself. “He had no interest in food,” Dani recalls. “He wouldn’t settle to nap and his breathing seemed weird. His eyelids were heavy and he was staring blankly at me.”

Dani took Charlie to the hospital, and Ivars met her there. Charlie was admitted right away. His oxygen was just 39%. Doctors were perplexed as he was not presenting like anyone with such low oxygen. Charlie would eventually be intubated. During this process, concerns arose that he may have suffered a seizure, but it was never confirmed.

Charlie spent two weeks in the hospital while doctors and specialists tried to determine the cause of his distress. His lungs were full of fluid, causing his left lung to collapse and bringing focus there, until an MRI test showed that his brain stem (which controls the lungs, speech, swallowing, eye movement, and more) was covered in lesions. With the damage to the brain stem, they couldn’t save his lung.

Charlie never came home. He earned his angel wings on April 10, 2023. The beloved little boy passed away in the arms of his mom, dad, and sister, two months short of turning two.

Months later, his family received Charlie’s official diagnosis of Leigh syndrome, a rare and fatal genetic mitochondrial disease with no cure. Charlie’s Leigh syndrome was due to a gene deletion, making it an exceptionally rare case.

When asked if there’s anything they know now that they wish they’d known before, the Leitis family found it a difficult question. Charlie lived a normal life for a toddler.

The family went to Sauble Beach, Santa’s Village, Canada’s Wonderland, Niagara Falls, and a Blue Jays game. Charlie took a music class, spent life at a dance studio, and saw Riley dance in two recitals. “These are all things that we wouldn’t have felt safe doing had we known he was immunocompromised,” says Dani.

“We often wonder whether we could have better protected him had we known sooner, but in us not knowing, Charlie was able to enjoy a better quality of life. We want to continue Charlie’s life by sharing his story,” says Ivars, “and we hope that sharing his story makes a difference in the life of another child. Our hope is that through his story and better awareness, health care specialists will see the signs and symptoms sooner.”

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MitoCanada’s Community Insights Report

MitoCanada is proud to share its first Canadian Mitochondrial Community Insights Report.

In 2021, MitoCanada set forth to better understand and identify the needs and priorities of the mitochondrial community in Canada. After a year of community consultations, MitoCanada crafted a robust report, sharing community insights, our learnings, recommendations and a step-wise process to aid in the implementation of those recommendations. MitoCanada is deeply committed to improving the physical, social, psychological, and financial outlook of individuals and families affected by mitochondrial disease in Canada. Together, we are energizing lives.

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