Million Reasons Run: Anna’s story

The Million Reasons Run virtual challenge has given hope to many Canadian families, raising more than $3.5 million since its inception in 2021 and creating a way to support 13 Canadian children’s hospitals across the country. The run will return for the entire month of May 2023, and represents a chance for Canadian runners to help raise much-needed funds for our children’s hospitals. (Sign up to start fundraising at the Million Reasons Run website, here.)

The beneficiaries of this fundraising are vulnerable children who are ill enough to have to spend time in the hospital. Luckily, our children’s hospitals are some of the best in the world. This is one family’s story.

The Boileau family of Cornwall, Ont., has been intimately familiar with the inside of the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa for the past 12 years–since six months after the birth of their first child, Anna, who was born with a rare condition called SELENON–a form of muscular dystrophy characterized by persistent muscle weakness, delayed motor skills and spine rigidity.

Anna’s muscle weakness resulted in frequent injuries, and despite being subjected to dozens of tests, including painful muscle biopsies, metabolic and genetic testing, a clear diagnosis only came only last year, thanks to a pilot project at CHEO involving genome-wide sequencing. The testing technologies available before Anna was enrolled in the pilot project could not identify the genetic variants that caused her condition.

As a result of her illness, Anna is small for her age and her bone development is delayed, but she still participates in swimming lessons and tries her best to keep up with her friends at recess. She’s an excellent students who loves to read and play video games. 

Anna’s mother, Mallory Boileau, describes what it was like to have a child who was mysteriously ill for years before doctors could figure out what was wrong: “It took 12 years to finally put a name to what Anna was experiencing every day, since she was an infant,” Boileau says. “When we got the genome sequencing results and diagnosis, it was the first time in 12 years that we were able to read something with a name on it and say, that’s it! That’s what we’ve been dealing with. It would be great for families to get this type of answer at the beginning of their journey. Twelve years is a long road not to have answers.”

Dr. Kym Boycott, CHEO researcher and chair of the hospital’s genetics department, echoes this: “For parents like Anna’s, there is an unbelievable and largely unseen stress that goes with not knowing what is causing their child’s condition,” Boycott explains. “Having that uncertainty linger for years and years is such a burden. As clinicians, we want to provide more certainty to these families as soon as possible.”

Having a clear diagnosis allows Anna’s care team to watch for potential complications associated with her diagnosis. As Boileau says, “The not knowing is sometimes more terrifying than anything. We’re no longer guessing all the time, and can address things before they become an issue. It’s such a relief. And we have CHEO to thank.”

The Million Reasons Run is entirely virtual, and lasts the entire month of May, so participants can complete the challenge wherever and whenever they want. There is no set distance–you can even dedicate your entire month of running to the event. All you need to do is sign up on the Million Reasons Run website, where can set your own personal mileage goal. You can track your kilometres on Strava, MapMyRun or any other fitness app. 

Whatever mileage you choose to count toward the challenge will significantly help Canada’s children’s hospitals, and families like Anna’s.

Registration for the 2023 Million Reasons Run is now open. Support local children’s hospitals by signing up to run, and enjoy 25 per cent off running gear at Saucony.ca.