For most, the idea of celebrating a 40th birthday by throwing out a first pitch at Fenway Park — accompanied by a son celebrating his 10th birthday — would seem remarkable. For Chris Snow and his family, it represented an achievement that had seemed impossible.
“It’s a homecoming and it’s a triumph,” said Snow, a Melrose native and former Red Sox beat reporter for the Globe. “To do this, to walk in here, it feels so, so good.”
Two years ago, Snow — an assistant general manager for the Calgary Flames — wouldn’t have had the audacity to imagine throwing out a first pitch at Fenway for his 40th, let alone being alive for it. He was diagnosed with ALS in the summer of 2019.
He’d already lost the use of his right (throwing) hand, and was told by doctors that he had a year to live — a timetable that was painfully familiar given that he’d seen the rapid declines of his father, two uncles, and a 28-year-old cousin because of the degenerative disease.
But that family history suggested a mutation that was subject to a clinical trial for the drug tofersen. After he enrolled in the trial, what was expected to be a rapid neuromuscular decline was stalled.
Snow has since experienced other changes. Renowned for his beaming ear-to-ear grin, he can no longer smile. Speech is difficult. Swallowing food became sufficiently dangerous — and choking sufficiently frequent — that he had a feeding tube inserted into his stomach.
Yet for all that Snow cannot do, there is much more than he and his family can do and are doing. He has learned to throw lefthanded so he can play catch with his children.
“He’s a darn good southpaw,” said his son Cohen, 10.
He can still skate, so he will have his right hand taped to a hockey stick so he can both play with and coach Cohen and daughter Willa, 6.
“There’s nothing different in our daily lives,” said Chris . “To be able to say that, that’s unheard of with this disease.”
Both Chris and his wife Kelsie — a former Globe intern who met Chris when both covered the Red Sox in the summer of 2005 — have become visible and vocal activists for the ALS community. Kelsie maintains a blog (Kelsie Snow Writes) about the family’s experience with ALS, and both continue to advocate for organizations such as I Am ALS and Team Gleason that are run by fellow ALS patients.
“Chris is a beacon of hope for the entire ALS community; [but] he’s not a typical ALS patient,” said Kelsie Snow, noting that Chris is able to take part in his trial only because of the mutation that affects roughly 1-2 percent of all ALS patients.
“While this is a really exciting development, we have to keep working really hard. There are more drugs in the clinical trial pipeline right now for ALS than there have ever been.
“If we can help people understand this disease and see what it does to people, I always say this is one of the reasons why I write, why I have my podcast. If you need a personal connection to this disease to care about it, I’m offering up my family.
“Care about our family. Be invested for our family so we can get enough people on board here to help us make real headway and make this a disease you can live with instead of die from.”
On Thursday afternoon, the Snow family — on vacation from Calgary at the New Hampshire lake where Chris summered while growing up — celebrated birthdays and life at Fenway Park. Willa threw a first pitch to Wally, after which fellow lefties Cohen and Chris stood on the rubber and threw pitches to Red Sox catcher Connor Wong.
“It means everything,” said Chris.