Kate Murray - MitoCanada

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:

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

Frankie G Pub Night Details

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Remembering Charlie: The Leitis family shares their story

Dani and Charlie pose for a selfie 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 smiles to the camera as Ivars holds him

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.

Desperate Pleas for Help

“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.”

Seeking Answers

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.

Remembering Charlie

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.

READ REPORT NOW