When the verdict came down on June 10, 2019, it was final. Chris Snow, a member of the Calgary Flames management team, was suffering from amyotrophic lateral sclerosis and only had a few months to live. Four years later, despite his physical limitations, he survived and was promoted to the team’s vice president of data analytics, giving hope to all affected by the devastating disease as the NHL season began.
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According to ALS Canada, 200,000 people worldwide are currently affected by this neuromuscular disease, also known as Lou Gehrig’s disease. Up to 80% of people diagnosed die within two to five years.
Only 2% of patients are thought to be affected by the aggressive form of ALS that Snow inherited. In an overly optimistic scenario he could have lived 18 months, but realistically he would most likely have lived much less.
In that sense, this case is a nice anomaly. Not only is he safe and sound, he continues to fulfill his duties with the Flames on a daily basis.
With his voice now seriously impaired, he agreed through an email exchange to tell the Journal about the illness that turned his life upside down overnight.
“An ALS Survivor”
Far from feeling sorry for himself, he rightly sees himself as a survivor who has no plans to give up his weapons in this merciless battle.
“I consider myself an ALS survivor. These two words have never been paired together before. I am proof that science is finally making progress, more than 82 years after Lou Gehrig’s death. I hope my story gives hope to patients, doctors and scientists who can sometimes feel discouraged. We need them to continue and be adequately funded,” he pleads.
In his previous life, Chris Snow was a sports reporter at the Boston Globe, where he covered the Red Sox.
In the mid-2000s, he received an unexpected call from Doug Risebrough, then general manager of the Minnesota Wild, offering him a position in team administration.
After a few seasons, The Wild cleaned up house and Snow found himself in Calgary in 2011 with his wife Kelsie and newborn son Cohen. Little Willa followed three years later. Snow worked his way up to assistant general manager with the Flames.
When fate strikes
The Kelce family at the NHL individual awards ceremony in June 2022. AFP
Everything was going too well until April 2019 when he started feeling weakness in three fingers on his right hand. Six months earlier, he lost his father to ALS.
The verdict came two months later. He, in turn, inherited the devastating beast.
“This disease took my father, two uncles and a cousin. My motivation is to honor her memory by showing the rest of the family that it all ends here with me. You can live with this disease instead of dying from it. I am motivated every day to remind my children that dad is still here and that he is doing well,” he says boldly.
Big challenges
Of course, not everything is a fairy tale and living with the disease is a constant challenge for Snow and her family.
Since autumn 2020 he has had to be intubated for nutrition. A simple smile has become impossible as the muscles in his face have atrophied. It is becoming increasingly difficult to express yourself.
“The most difficult thing is communication. We are social creatures. It is this connection that gives meaning to our days. I can no longer smile or speak above a whisper. It’s very frustrating. I’ve spent my entire career looking for solutions, and now I’m doing the same with my body. As my wife often says, we improvise and overcome,” he says.
In this everyday life full of obstacles, Chris Snow still finds happiness in many little things.
The smell of the grass he can still mow. The daily newspaper is dedicated to trying to revive the flames. Each month that passes shakes the darkest predictions that concern it. But there is absolutely nothing better than the love that his family cocoon shows him.
“My children are full of energy because they still see me as the old version of me. I love watching them play hockey and baseball. “I shouldn’t be here to see all this,” he states clearly.
“Everything my wife does for me keeps me going. The personal sacrifice she makes for herself is as incredible as her knowledge of my illness. I experience several physical challenges and she always finds solutions. Without her I wouldn’t be here. »
Intensive care unit
In December, a virus sent him to intensive care for two weeks. He was on life support twice. People with ALS very rarely recover from such surgery. Even less twice.
“My family is convinced that I will live a long time,” emphasizes the survivor.
In the end, Chris Snow will not only convince his family that a true miracle is happening before our eyes.
Every day at work in the Flames offices
In addition to being the Flames’ assistant general manager, Chris Snow is also vice president of analytical data. Photo from Kelsie Snow’s Facebook
To some watching from the outside, someone struggling with a disease as devastating as ALS should take time away from work to enjoy the few beautiful moments life still has to offer. In Chris Snow’s eyes, life away from the hockey world is not an option.
When the Flames formalized the hiring of Craig Conroy as general manager in May, several other members of management were also promoted.
Such is the case with Snow, who was named vice president of analytical data while retaining his position as assistant general manager. Anyone who sees it as just a simple gesture of charity can change their mind immediately.
“I’m in the office every day,” says Snow when asked if he still manages to get his work done every day.
“Ultimately, if people are patient enough to join me where I am physically, I can give the same value to the team that I have always been able to give. I am extremely grateful to have people like Murray Edwards [propriétaire]John Bean [président]Don Maloney [président des opérations hockey] and Craig Conroy share this vision.
“There were times when it seemed like all options had been exhausted [pour continuer de travailler]but I have often repeated: there is always a way,” he explains.
Advanced statistics
More specifically, Snow has sunk into the pot of advanced statistics. A few years ago he hired an employee himself to build a complex database.
Basically, this tool allows for the collection of a variety of data collected via electronic chips inserted into the puck and players’ uniforms. These statistics are then linked to each player’s videos.
Recruiters, coaches, and management use this system when making personnel decisions, hiring players, contract negotiations, and other situations.
Thankful
Although the physical limitations in his life are becoming more and more numerous, his mental abilities are intact and the pace of work has never slowed.
“Honestly, I haven’t felt this healthy since the summer of 2022. I have learned to differentiate between health and incapacity. “I’m more physically limited in my upper body than I was last summer, but I feel healthy,” he likes to emphasize.
“I know it is a challenge for the people around me. I sometimes feel like they just want to say or do the right thing but don’t know how to go about it. I can only be grateful to all the people who are working to close the gaps that divide us. »
A true “model of resilience”
Former radio host Mario Hudon was diagnosed with amyotrophic lateral sclerosis in December 2020. Last December he hosted Le Journal for an interview at his home. Photo Stevens LeBlanc
If anyone can appreciate the importance of Chris Snow’s inspirational story, it’s Mario Hudon. Since receiving the sad diagnosis in December 2020, the former host has been battling ALS himself and continues to show the same courage, even if the neurodegenerative disease does him no favors.
Hudon, who worked in Quebec’s sports radio community for many years, repeatedly referred to Snow when discussing the illness.
The man, widely known for his humorous style and verbal outbursts, has also been finding it difficult to speak for some time now. However, the spirit has lost none of its vitality and continues to believe that rare cases like Snow’s can make people realize the importance of investing in medical research.
“He is the role model we need. He is strong enough to come back after intubation. He never stood in the corner crying and that’s how we move forward. It helps people accept the disease better,” said the man who is equally inspiring in his fight.
“Chris is a model of resilience. He keeps working and it’s not easy to find that courage. It shows everyone that this disease is not the end all be all,” he continued.
Always positive
Mario Hudon makes no secret of the fact that his health has deteriorated significantly in the last few months. Despite everything, it seems to him as if a ray of light keeps penetrating the darkness.
“I still laugh a lot. I’m sick, but I’m sane. “I’m still alive,” he announces.
Like Chris Snow, Hudon continues to persevere.
“I try to stay active. “I’m fine in my head, but my body is an old mess,” he finds a way to laugh.
Message of hope
In his eyes, it is important that people like him and Chris Snow remain as visible as possible so that the fight against the disease continues.
“It’s too late for me, but for others who will be living with this disease in the next few years, there are medications that will work at some point,” he hopes.
An everyday life that is not obvious
The Snows’ daily family life presents obstacles due to illness, punctuated by small moments of light. Through his social networks and his podcast I’m sorry I’m sadChris Snow’s wife Kelsie has the ability to describe disturbing situations well. Here are some excerpts from their latest episode that summarize the current state of mind well.
Last December, the whole family traveled to Toronto to celebrate Chris and Kelsie’s 15th wedding anniversary. A few days before departure, Chris began to feel unwell and was eventually taken to the intensive care unit for two weeks.
Chris Snow and his wife Kelsie as he lay in intensive care last December. Photo from Kelsie Snow’s blog (kelsiesnowwrites.com)
“Nobody expected it to be complex. He insisted we go to Toronto without him. I fell asleep and woke up in the middle of the night to seven text messages and three missed calls from Chris. His breathing worsened and he had to be intubated. Reading the news, I have never felt so alone in my entire life. I was shocked and scared. I went to the ICU around 3:15 a.m. and wasn’t able to see Chris until 8:30 a.m. I thought about my two sleeping children who I had to wake up and tell them that their father was on a ventilator.
The specialist told us that he had never seen a patient suffering from this disease recover after artificial ventilation. Chris did it twice rather than once. He came home for Christmas. The Chris who came home is a very different Chris than the one who went to the hospital two weeks before.”
Although Chris Snow is healthy, he has become significantly more physically impaired since returning from the hospital.
Chris Snow and his two children Cohen and Willa. Photo from Kelsie Snow’s blog (kelsiesnowwrites.com) Photo from Kelsie Snow’s blog (kelsiesnowwrites.com)
“There are a lot of things that we enjoyed doing together, that allowed us to socialize, that we can no longer do. It’s like rewriting a relationship. He can no longer drive his car. He can no longer ride a bike like he used to. He can no longer hit a baseball or throw a football. These new things he can no longer do are piling up and we still have to adapt. I’m going through the darkest time of my life.
Suddenly he needs help with every little thing he needs to do to prepare for the day. He needs to be helped to get dressed, go to the toilet and dry himself after showering. His left shoulder is completely finished. His left hand isn’t great. His right shoulder is still strong, but his right hand has been damaged for a long time.”
In March the family was able to afford a trip that did a lot of good.
“We were in Florida and it was fantastic, even though it was a lot of work. Now you have to manage all your medical equipment and never know what could happen. The children were afraid that something might happen on the plane. We were able to go to baseball games and go swimming. We have become a real family again and not a family in crisis.”
Everyday life presents its share of challenges, but the Snow family has just experienced another heartwarming summer.
Chris Snow posted a message on Father’s Day Sunday about the things he can still do, like mow the lawn. Photo via Twitter/Chris Snow
When Chris was diagnosed in June 2019, the neurologist gave him a life expectancy of 6 to 12 months. Our saying has always been: believe in the best scenario, but plan for the worst. This is our fifth summer creating lifelong memories. We will enjoy every moment of this life that we have left together.
At this stage of the disease, Chris Snow is finding it increasingly difficult to speak, so he and his wife are currently trying out a voice recognition app to help him communicate.
Once he received the diagnosis, Chris Snow was able to receive a then-experimental drug: tofersen. This drug was officially approved last April.
Chris Snow accompanies his son Cohen to one of his hockey games. Photo from Kelsie Snow’s blog (kelsiesnowwrites.com) Photo from Kelsie Snow’s blog (kelsiesnowwrites.com)
“It is no longer experimental and the effects have been proven. It is only the fourth drug approved to combat the disease. This is a great hope for the entire ALS community. Tofersen gave us years of quality of life. Today we can say that Chris is more disabled than he was a few months ago, but he is not sick. He is doing well on this side and that makes us think he could live like this for several more years.
It’s frustrating and painful for me because I’m THE person who has to understand him when he speaks in a room full of people. The pressure to be the perfect performer can become unbearable.
We are experimenting with digital voice. It’s not perfect because it’s not Chris, but we’re starting to get comfortable with an application. We have started to enable children to hear the digitized voice. Our son liked it, but it made our daughter very sad. He is not her father and it hits us square in the face when our 8-year-old daughter tells us that daddy will never get better.”