diagnosed at age 44 with als, this mom and advocate left this world swinging
the magic and determination of taya jones had us all believing that she would be the one to beat the impossible odds of als.
4 minute read
a cut-out of taya jones with lou gehrig at last year's jay game in buffalo. supplied
there’s this thing about people who want to make change. whether they are advocating for a new stop sign on a busy street or for more and better housing for marginalized communities, they all share a common trait: grit.
they fiercely believe they are going to succeed, no matter how daunting their quest is or how impossible it seems. even when others tell them it can’t be done, they push on. and despite heartbreaks and frustration — maybe they even give up for a day or two — they keep going, they keep talking, they keep convincing others to stand with them because they believe it’s the right thing to do.
this was taya jones. diagnosed with als — one of the most feared and most devastating diseases — taya, a 44-year-old single mom of three, looked it in the eye and, with fists poised for the fight of her life, started swinging.
her first fight was the diagnosis. experiencing a strange weakness in one of her hands, she pestered her family doctor for tests to get to the bottom of what was causing it. she quickly found herself stuck in the sludge of misdiagnoses, like so many people with symptoms of als — because doctors start with the most likely reasons for symptoms, but also, because doctors don’t like telling people really bad news. taya persevered though — she must have known that something wasn’t right — and then, she defined the battle.
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in the first few months after finding out she had als in 2018, taya worked hard to access edaravone — a treatment that was not available in canada — that had been shown to slow disease progression. she had an unflinching supporter in her friend paige wilkins, who, in an interview for healthing’s series how i care, told writer maja begovic that although edaravone was difficult to get, taya advocated for herself and successfully ordered the drug from japan. then she had to figure out the details, like nursing care and how to get an iv port implanted. she also investigated several naturopathic remedies.
in late may, taya spoke to healthing about her advocacy work, saying that she was known for not taking no for an answer.
“services don’t exist for people with als, so there have been a lot of big fights,” she told writer dave yasvinski in may. “the health-care system is impossible to navigate anyway but because my entire career was spent advocating for patients, i have it in me to do these things. i was forced into als retirement earlier this year, but that’s ok because i have filled my time helping others.”
as her condition worsened, paige, who left her job to care for her friend, said that taya was hoping to get access to nurown, an experimental stem cell treatment from new york-based biotech brainstorm cell therapeutics. taya had been waiting for fda approval — unfortunately, the wait for that therapy continues.
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i met taya from afar at a blue jays game on june 2. a bunch of als advocates and supporters gathered not only to see the jays play the chicago white sox, but also to mark lou gehrig day — a day named by the mlb in honour of gehrig, the legendary new york yankees first baseman who died from the disease. it was an als awareness-raising event largely spearheaded by taya — a big jays fan — who, flanked by her three children and friends, exploded in a loud cheer when the announcer called attention to the part of the stadium filled with rows of purple als shirts.
‘als will be a treatable chronic disease’
in july, dr. angela genge, the executive director of the clinical research unit at the montreal neurological institute at mcgill university talked to healthing about another promising treatment, called amx0035, which has been approved by health canada with conditions — only the third als treatment option available to canadians. she offered patients hope:
“treatments for this terrible disease will come, science is moving us forward all the time,” she said. “every step gives our patients more time, better function for longer, better care every year. we will overcome this disease and als will become a treatable chronic disease.”
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unfortunately, it will be too late for taya, who died with dignity on august 7, 2022.
i can’t imagine her heartbreak when taya realized that while her brain was still pumped for the fight, her body couldn’t and wouldn’t keep up. that just wanting to continue on wasn’t enough. was it her loving kids who gently gave her permission to rest? did paige wrap her in a warm embrace and hold her tightly as she angrily railed at the unfairness of it all? i don’t know, but what i do know is that when als picked taya jones, it for sure did not expect to come up against such an incredible force.
and even though i was well aware of the way the story of als ends, taya’s energy and grit convinced me that maybe she would actually be that one — the one who beat the impossible odds, the one who proved the numbers wrong, the one who found the magic that would allow her and others to live. she believed, and made me — and many others — believe.
taya and i were planning to record a discussion with her and her doctor about the challenges faced by people with als, as well as how critical it is to have access to treatments, but we ran out of time.
in her last email to me, she wrote that we were both warriors. no way, taya, you are the warrior. thank you for the legacy of courage, strength and advocacy that you have left. rest in peace.
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