Flames’ Chris Snow defies odds to celebrate anniversary of ALS diagnosis

Flames Assistant General Manager Chris Snow, along with his wife Kelsie, join Scott Oake for an update on Chris' ongoing battle with ALS as he continues to lead an active life, thanks to promising results from an experimental gene therapy trial.

It has been a year since Chris Snow was told he had one year to live.

One year since the Calgary Flames assistant general manager started losing the use of his right arm, prompting tests with doctors that confirmed he was the latest in a long line of family members to have ALS — a progressive neurological disease that has no known cure.

But, thankfully, Chris’ family won’t need to mark next Wednesday’s official anniversary with funeral arrangements, they have other designs.

“I will probably do something intensely physical – a long bike ride or something I never should have been in a position to do,” said Chris, between a series of Zoom interviews with draft-eligible prospects.

“I’ll tell myself every day, from that day on, that this is a bonus. This was not guaranteed to me. In fact, quite the opposite, it was very likely to be taken from me. So that’s a day I’ll feel a great deal of gratitude, and every day after that I’ll try to remind myself of that gratitude.

“I think a lot of days it’s human nature to feel anxious and concerned, even though I am beating the odds already. But on that date, we will celebrate.”

Just as the Snow family recently celebrated the two-year anniversary of wife Kelsie’s stroke, which she fully recovered from, they’ll gather around to count the sort of blessings that come with Chris’ ability to still hoist five-year-old Willa onto his shoulders before heading down for morning coffee on the back deck.

“I was watching him today and thinking about where we were a year ago, and I thought, ‘Really nothing about our lives has really changed in the last year,’” said Kelsie, whose brilliantly written blog about their journey is a must-read.

“That is absolutely reason to celebrate when you get the diagnosis and the timeframe that most people that have his type of ALS get. It’s absolutely a miracle already. We might have had this bump in the road, and our anniversary date isn’t coming in the perfect way we thought it would, but that’s life. And if we’ve learned anything over the last year it’s that nothing happens the way you think it’s going to.”

That bump in the road came via Chris’ infectious smile.

Kelsie recently noticed a slight droop in the grin that helped reel her in as a young newspaper intern at the Boston Globe 15 years ago.

“Every single visit I walked out of the hospital in Toronto completely unchanged created this belief in us I could potentially go forever with no change,” said Chris, who’s part of a clinical trial to combat the disease that shuts down the body and typically ends life within six to 18 months of diagnosis.

“So when we noticed a bit of a change in my smile, which indicated a bit of a change of a facial nerve and muscle, it rattled me. It kind of burst that bubble of this potentially not changing me anymore at all. Now we’ve been reassured as time has gone by that whatever progression there is it could be a little bit and then nothing for a long time. If there is a progression, it’s going to be a lot slower than it would have been without this medication. What happened to me last year, with my hand, nothing is going to be as quick and pronounced as that, as we understand it.”

Unable to tie his shoelaces, cut his food or do anything that requires the use of his right arm, Chris still coaches his son’s baseball and hockey teams by throwing and catching left-handed (a la Jim Abbott) and using a hockey glove modified by Flames equipment staff.

“It’s been more of a mental challenge than a physical one,” said Chris.

“He improvises and overcomes,” added Kelsie, a former baseball writer, like her husband.

“When I was covering baseball, Ron Gardenhire was the manager of the (Minnesota) Twins and he had a sign in his office that said that, and I remember always liking that saying. As this has happened that’s become kind of a family motto for us. That’s what we do. Losing the use of your dominant hand is not a small thing, but he’s made it a small thing. Everything he plays with the kids he just does with his left hand. That’s just a testament to him and to how positive he is and how he deals with what’s in front of him.”

Chris continues to be a workhorse in the Flames’ front office, overseeing the analytics department while also assisting with player development and contract negotiations. GM Brad Treliving marvels at Chris’ resilience, positivity and insistence on remaining busy.

The COVID-19 pause has certainly given Chris much-cherished time with his family, which has been his focus since the diagnosis of a disease affecting roughly 3,000 Canadians.

Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease, gained increased exposure in 2014 with the ice bucket challenge, an online campaign encouraging people to dump ice water over their head to raise awareness and money for research.

The Chris’ public battle with the disease has not only raised more than $140,000 for research, it may also be on the precipice of another viral campaign – the #TrickShot4Snowy challenge.

Launched by the Flames Foundation’s Candice Goudie on Wednesday as part of ALS Awareness Month in Canada, it encourages people to film a trick shot of any kind, post it and nominate two others to strut their stuff while asking for donations.

“Shoot a baseball into a garbage can or a basketball over your house — people can be fun and creative and you get to show off a little bit, which everyone wants to do,” laughed Chris, who will be challenging players around the NHL and the sports world – many of whom reached out to him upon learning of his diagnosis.

“Cohen (their eight-year-old son) has been thinking about his trick shot for weeks now,” added Kelsie.

“It’s a really pivotal time for ALS research. If we can keep pressing, amazing things can happen, including more access to clinical trials.”

Amazing things have already happened.

Ask the Snows, who’ve come to live life the best way possible — in the moment.

“This disease made it very easy to slow down and not look at the following day, because No. 1, it can be a little overwhelming to project forward and wonder how you’ll feel and look,” said Chris.

“No. 2, you have a greater appreciation for what is right there in front of you. I don’t think I changed the way I lived a great deal, because I always coached my sons’ teams and was always playing on the floor with my kids and going to the park every single chance I get to parent. I think it’s easier to feel content in that moment and not think about what I’m doing in a week or a month, because that’s a lot of time when you’re given a year.”

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