A single mom living with ALS has high hopes for Lou Gehrig Day

For Taya Jones, a single mother of three, there has been one silver lining during COVID-19, and that has been making memories with her children in the evenings, after work and school. “We’ve been isolated together for more than a year, and it’s been probably the best year of my life because of that. ALS can’t take away my memories,” she says.

Taya was diagnosed with ALS in 2018, something she was totally unprepared for having been an athlete all her life. “I thought, ‘oh my God, my kids, what am I going to do?’ I’ve done Ironman triathlons – I ran marathons and was a figure skater as a kid. To take away my physical skills was too much.” Today, every time she sees someone put their hair in a ponytail, she thinks, “what I wouldn’t give to be able to do that again.”

“I need to help build my children’s resilience as much as I can right now, because my kids are going to be without me one day – that’s the reality,” Taya says. “ALS can take away my physical capabilities, but it doesn’t take my joy – it cannot take my love, it doesn’t take my intelligence. It hasn’t taken my smile yet, but it can. Even when it does, my smile will go inside. It’s about learning to let go of what you can’t control.”

Taya and her kids, who are also her caregivers, are all in for Lou Gehrig Day. They are all ardent Blue Jays fans and look forward to June 2 – a day that will mean so much to them as a family living with ALS.

While there are two approved ALS therapies in Canada, Taya doesn’t consider either to be a treatment. “We all know that the same thing that happened to Lou Gehrig 80 years ago still happens today – there’s no treatment for someone who’s diagnosed with ALS,” Taya says. “Hopefully the awareness around Lou Gehrig Day brings on some funding for research towards a treatment. This is going to be something that happens every year now. I think we’re going to be able to maximize this, especially after the Jays come back to Toronto.”

Taya has been a Jays fan all her life, since her childhood playing t-ball in Nobleton, Ontario. In 1993, she happened to be near the third base line at the World Series Jays game where Joe Carter hit the winning home run. “I was far enough that you couldn’t see if it was a fair or foul ball, but the entire place just lit up. I felt grateful to be part of something so incredible,” Taya says.

When she was a recreation therapist at CAMH, Taya and her friend, who worked a floor above her, would take patients to Jays games. Today, the two friends both have ALS, a devastating disease that targets the motor neurons in the brain and takes away voluntary muscle function.

“I’d love to see the Jays donate a certain amount of money to ALS research for every strikeout that happens in the game on Lou Gehrig Day, or maybe fundraise from one of the jerseys they might have,” she says. “The Jays could have a team in our Walk to End ALS – that would be tremendous if we could align. But at the very least, it’s important to talk about Lou Gehrig, what happened to him and that the time is now to strike out ALS.”