“my kids are great, they’re like, ‘this sucks, but ok mom, let’s go. we got this.’ they are building resilience and they are strong,” says taya jones (pictured here with her children, from left: saige, mack, taya and rhys). supplied
there’s still no treatment for als — it’s 100 per cent fatal — but now we have three drugs that sort of slow the progression of the disease. at the time, canada didn’t have edaravone, so i procured it from japan. i got myself on that but then you have to figure out how to get nursing care and how to get an iv port implanted and all sorts of other things.
my neurologist will tell you i’m a force to be reckoned with. i do it as politely and respectfully as i can — with a big smile — but i don’t really take no for an answer. services don’t exist for people with als, so there have been a lot of big fights. the health care system is unnavigable 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.
how did the event with the blue jays come about?
with lou gehrig day, it just became this tremendous opportunity because it’s the first time we’ve had a national platform for awareness. last year, we did it virtually because of covid-19. the blue jays were playing in buffalo during the pandemic, so they did cardboard cutouts of us in the stadium. my cutout was right beside lou gehrig and it looked like his arm was around me. my kids and i, we couldn’t believe it.
there hasn’t been an awareness campaign like this in the history of als. major league baseball named june 2 for last year and forever more as lou gehrig day. that’s a serious commitment by an organization. i’ve done some work with an american group called
i am als
, so i’m their canadian representative for thursday. we’ve sold almost 200 tickets for our section for the game and we’re going to take the rogers centre by storm.
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