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.

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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: