CALGARY, Alberta — Luck is available in all disguises. For Chris Snow, an assistant general manager for the N.H.L.’s Calgary Flames, that is what lucky looks like, for now:
He was home on a Friday night, on the couch together with his wife, Kelsie, and their children: Cohen, 10, and Willa, 7. Someone began a silly game — “slow-motion fights.” At molasses speed, they traded fake punches to the jaw and exaggerated grimaces. It was a bout of laughter.
Willa, gaptoothed like an old-time hockey goon, shrieked.
“What’s so funny?” Kelsie asked.
“Daddy’s making faces,” Willa said.
“Daddy can’t make faces,” Kelsie said.
No, Chris Snow cannot make faces. Not anymore. At 40, he also cannot make a fake fist with considered one of his hands, and he cannot eat with out a feeding tube.
But he’s here, for now, and that appears like the luckiest thing on the planet.
Three years ago, Snow was in a workout room on the Ritz Carlton in Denver through the first round of the Stanley Cup playoffs when the three outer fingers of his right hand suddenly felt weak.
About six months earlier, a genetic strain of amyotrophic lateral sclerosis, or A.L.S., killed Snow’s father, nine months after diagnosis. It also killed two uncles and a cousin.
There was an anxious stream of appointments and tests, but A.L.S. is diagnosed only at the top of a means of eliminations. Perhaps a pinched nerve? No. Perhaps this, possibly that, possibly something else? No, no and no.
Two months of dwindling hopes ended when Snow was diagnosed with A.L.S. in June 2019.
By then, his right arm had noticeably degenerated. A.L.S. spreads fast. Snow was expected to live not more than a 12 months.
Three years later, the Flames have had their best regular season since 1989, once they last won the Stanley Cup. They won the Pacific Division and have visions of one other championship run.
The most important surprise to Calgary’s postseason is likely to be that Snow is here to see it.
He took a fake punch from Willa, fell back and rolled his eyes back in his head.
“Daddy’s funny,” Willa said.
A.L.S. has not taken him. Not yet.
How lucky is that?
‘That is the time of your life you will have to do the whole lot together.’
About 90 percent of cases are classified as sporadic, appearing to inflict people randomly. About 10 percent of A.L.S. cases are familial, brought on by a mutated gene. That’s what Snow has. Odds of passing it to the following generation are 50-50.
“We’ve lost a variety of coin flips within the Snow family,” Kelsie said.
Most A.L.S. stories are the identical, no matter origin. The disease spreads, limb to limb, atrophying them into paralysis. Speaking, eating and respiration turn into increasingly difficult. Death often comes inside a few years of the primary symptoms.
One in every of Chris’s uncles died of A.L.S. in 2004, at age 48. One other died in 2013, at 52. That uncle’s son died in 2016 at age 28, 18 months after his diagnosis.
Then A.L.S. got here for Chris’s father.
“I used to be not scared until my dad was diagnosed,” Chris said. In nine months, Bob Snow was gone at 68.
On the gut-punch day of June 10, 2019, when Chris’s diagnosis was confirmed by a neurologist in Calgary, Chris and Kelsie melted in tears. But additionally they scrambled for answers. They contacted a physician on the University of Miami, Michael Benatar, who studied the rare strain of familial A.L.S. that Snow’s father had.
The Fight Against A.L.S.
The illness, also called Lou Gehrig’s disease, robs people of their ability to maneuver, speak, eat and ultimately breathe.
Every week later, the Snows left the youngsters with friends and went to Florida. Tests probed Chris Snow’s body and mind, analyzing his motor skills, his lung capability, his memory. The couple went to lunch on a dreary day. We’d like a miracle, they told one another.
The miracle arrived in the shape of a “but.” Yes, you appear to have A.L.S. But it’s possible you’ll be eligible for a promising gene-therapy trial.
Chris was the winner of the bad-luck lottery, as Kelsie said. He had the suitable form of A.L.S. — a mutation of the SOD1 gene, which affects about 2 percent of all A.L.S. patients. The trial was entering its third phase.
Could it stop the decline entirely? The response stays etched in his mind: It will not be outside the realm of possibility. Chris was enrolled.
Buoyed by the considered living longer than a 12 months, possibly even living for years, the Snows headed home, collected their children and went to Vancouver for the N.H.L. draft. They made plans for one of the best summer ever, believing — expecting — it may very well be their last one as a family.
“That is the time of your life you will have to do the whole lot together,” Snow said.
An unusual profession turn
The Flames have three assistant general managers, including Craig Conroy, a former N.H.L. star. Snow’s primary role is to oversee a fancy digital warehouse for data and video, something he developed years ago as hockey’s version of DiamondView. Other N.H.L. teams followed.
Lately, hundreds of information points from each game are collected from chips implanted in player uniforms and the puck. Every conceivable statistic is rendered and linked to a corresponding video with one click. Coaches, scouts and front-office personnel use this system to tell the whole lot from power-play mixtures to contract negotiations. Snow has three full-time employees.
Kelsie sometimes uses the movie “Moneyball” as shorthand to clarify what Chris does for the Flames.
“The Jonah Hill character,” she clarified.
“Not Brad Pitt,” Chris said.
“Definitely not Brad Pitt,” Kelsie said.
The 2 met in 2005. He was the confident young beat reporter covering the Red Sox for The Boston Globe, his hometown paper. She was the paper’s summer intern from South Dakota. Romance bloomed in Fenway Park’s press box.
Chris soon had profession options. Sports Illustrated called. But then Doug Risebrough, the final manager of the Minnesota Wild on the time, offered Chris a vaguely defined front-office job. It was such an unusual profession turn that Esquire wrote about it.
The couple moved to Minnesota, married in 2007, and Kelsie covered the Twins. However the Wild cleaned house after a number of seasons and Chris landed as director of hockey evaluation in Calgary in 2011. The Snows moved with newborn Cohen in tow.
By the point Snow was diagnosed with A.L.S. the youngsters were 7 and 4. He could now not clench his right hand. He couldn’t cut meat or tie his shoes. But he insisted on working. The Flames promoted him to assistant general manager.
“It’s identity,” he said, sitting at his desk contained in the Saddledome, where the Flames play. “It’s being a provider. It’s losing yourself in something. And it’s showing our children a model of ultimate resiliency.”
He paused. A family photo from Fenway Park hung behind him. All 4 Snows threw out first pitches there last fall.
“Nonetheless this goes, and whether it ends or continues, our children will likely be so a lot better for it,” he said.
Treatments with a gene therapy produced by Biogen called Tofersen began in the summertime of 2019, delivered by spinal tap every 4 weeks in Toronto. For the primary six months, Snow couldn’t make certain whether he was within the control group given a placebo. But almost immediately, atrophy slowed.
The Snows dared to dream that perhaps the disease had stalled. Perhaps Chris would merely live life without using a right arm.
“In fact, we all know he resides with an illness that, thus far, nobody has survived,” Kelsie wrote for Sports Illustrated in early 2020, adding: “I’ll brush off my fear of losing him and be pleased about one other day that Chris has simply, miraculously, stayed the identical.”
Then got here the day before Easter in 2020. The family was sledding. Kelsie told Chris to smile for a photograph. No, a greater smile, she said. He tried. His broad, toothy grin was crooked on one side. Dread roared back.
“When this happened,” Chris said, pointing to his face, “I used to be really, really scared.”
The decline was quick. His facial muscles atrophied; doctors soon found that even his eyelids were weak. Swallowing became difficult, then nearly unattainable. His voice softened and his lower lip drooped. His face froze right into a deadpan look.
Sometimes, considered one of the youngsters that Chris coaches in baseball and hockey will say to Cohen or Willa that their father looks indignant. They shrug. He all the time looks that way, they reply.
“It is de facto hard to indicate emotion,” Chris said. “Rarely does my voice do it, and never does my face do it.”
The coronavirus pandemic, with the wide use of masks, has allowed Snow to cover his drooped mouth.
“I still haven’t gotten over being self-conscious about my appearance,” he said.
About six months after the primary sign of a crooked smile in April 2020, Snow needed a feeding tube. It connects on to his stomach, a number of inches above and to the left of his belly button.
The goal is 4,000 calories a day, to offset the expected weight reduction that comes with A.L.S. Some meals are store-bought formula, like Isosource, poured into an IV-style bag and fed into him with gravity.
But Snow likes the concept of homemade food, even when he cannot taste it. Kelsie makes meals, a mixture of blended ingredients — possibly oil, hemp hearts, milk and something like blueberries or spinach, measured and mixed to a viscosity that may be fed through his stomach tube with a syringe.
Lately, Snow can sip water, coffee, even the occasional vodka tonic through his mouth. He uses his floppy right hand to carry his lips closed and sips from a cup held in his left.
Choking is a continuing concern. Snow went on a Flames road trip last fall, carrying containers of liquid food. A late meal got here up within the night, choking Snow and sending him to a Toronto hospital. A month later, at home, one other choking episode woke up and terrified Cohen.
Snow takes anti-reflux medication and sleeps propped up on a pillow wedge. For months, things have steadied. He can still lift his right arm over his head, even do push-ups. His legs remain strong, as do his lungs — all positive signs in A.L.S. patients.
“We’re all the time waiting for the following shoe to drop,” Kelsie said.
Chris still works day-after-day within the office, attending all home games. The Flames expanded his small office in order that it could fit a couch. Snow lies on it for meetings and calls because his voice is clearer, more full-throated, when he tilts his neck back.
He may be hard to know, especially within the din of a crowd. Those near him are used to it, like knowing someone with a thick accent.
Snow subconsciously keeps his left hand near his chin, pushing his hanging lip closed until gravity drops it open again. When he speaks, he uses his left hand to assist move his lower lip, almost like a puppeteer, to assist with words that need closed lips for enunciation — like those with numerous P’s, M’s and B’s.
Flames General Manager Brad Treliving admitted to a reflex to guard Snow, to lighten his workload, to make concessions. Snow notices when people treat him otherwise.
“I remember him telling me, ‘I’m not dead,’” Treliving said.
Snow recalled something his father told him: It’s not dying that scares him. It’s what comes before that.
“I don’t spend much time, any time, pondering beyond today and tomorrow,” Snow said.
That’s the Flames’ approach, too. There isn’t any playbook for navigating the uncertainty. Decency is the rule.
“I roll with it,” Treliving said. “We’re not naïve. But you see what he’s been in a position to do already, so my mind doesn’t go there. I just don’t go there.”
It helps that the Snows do their best to lighten the darkness with humor.
“Persons are all the time surprised at how good he looks,” Kelsie said. “I tell him, they literally think try to be dead. The bar’s very low for you.”
Essentially the most meaningful hockey games is likely to be within the basement, not the Saddledome. Chris plays goalie. He kneels, holding a miniature keep on with his left hand. Cohen peppers him with shots of a squishy ball; Willa, on her dad’s team, chases and tries to smack loose balls right into a tiny goal across the expanse of soppy carpet.
Chris provides the play-by-play. The children push, argue, laugh, get sweaty. Chris belly laughs his approval.
The struggle — a struggle — is the best way to live for today while preparing for the long run.
“It’s a stay of execution, right?” Kelsie said. “You’re going to die. But possibly not. Or possibly not for a very long time.”
The questions range from philosophical to practical. Will Chris have the option to make use of the steps in a number of months? His left hand has lost a touch of strength, however it appears like the decline has plateaued. Is that for now, or without end? What happens if and when Chris is gone? The Snows attempt to thrust back the what-ifs.
One uncertainty hangs heaviest: the genetic coin flip facing the youngsters. The Snows have tried to place that, too, out of mind, with their doctor’s help.
“We’re going to cure familial A.L.S. within the not-too-distant future,” said Dr. Lorne Zinman, director of the A.L.S. Clinic at Sunnybrook Research Institute in Toronto, who enrolled Snow within the study and oversees his care. “And I tell Kelsie and other families, don’t worry about your kids. We’re going to get there by then.”
Last fall, the Tofersen trial ended with uneven results — officially, it didn’t meet its goals, leaving its future approval uncertain. But Snow will proceed the monthly infusions, believing that they’ve slowed the progression and spread of his A.L.S.
The Snows are comfortable putting a face on A.L.S., providing rare hope and real talk. Kelsie spent the early a part of the ordeal writing a blog that has evolved right into a podcast called, “Sorry, I’m Sad.” It mostly highlights the stories of others.
“I discovered there have been a variety of individuals who, once they heard a tragic story, wanted a likelihood to inform their sad story — an area,” she said. “I assumed there needs to be more spaces for this.”
There are fleeting moments when things feel perfect. In March, the Snows were sworn in as Canadian residents. Chris plays regular games of poker with friends on the back deck. Last week, the family went skiing and Chris carved perfect turns.
Now there may be a team dreaming of a Stanley Cup.
Before the playoffs, while being fed through a tube, Chris said how lucky he was.
And on the front porch later, her family cocooned inside, Kelsie said the identical thing.
“It’s crazy,” she said, squinting into the nice and cozy and falling sun, “how your definition of luck changes.”