Chris & Kelsie Snow

If there's one thing the Snow family's children have been happy about during this pandemic, it's having their dad, Chris, working from home.

“My kids think it's the best thing in the world,” said Kelsie Snow, chuckling.

But just having Chris in their lives is the main thing.

Assistant general manager of the Calgary Flames, Chris was diagnosed with ALS (a progressive nervous system disease) in June of 2019. His wife, Kelsie, a freelance writer, has been chronicling the family's journey in her blog.

“When Chris was diagnosed, we realized early on that he would have a different platform than a lot of people that deal with this illness,” Kelsie said. “We believe that curing ALS or putting ALS in remission is through research, and we believe that raising money for research is by raising awareness.

“I found it very cathartic. I can work through things as I'm writing and editing them and put it out into the world.”

Chris, 39, has been part of a drug trial since July 2019 and his illness had no progression until April of this year. After developing some swallowing issues, in late November he had a feeding tube inserted.

“Other than that, he was coaching both our kids' teams — until we lost hockey — he's taken them to play shinny and he does all the things he normally did,” Kelsie said. “He's on the back end of the life expectancy that his specific type of ALS has (six to 18 months). He's now 18 months from diagnosis. It's a miracle, and there's a lot of hope in the ALS community how Chris specifically is responding to this experimental medication.”

Her blog also keeps their families updated, as Chris grew up in Boston and Kelsie is from a small town in South Dakota.

“It's a message of resiliency,” she said. “Choosing positivity and choosing to be grateful. Next year, I hope we're all still here.

“One of the things that's important to remember, whether it's ALS or not, nobody has that guarantee. What we want, when everything is stripped away, is time. Time together.”