I knew something was wrong when I couldn’t do up the snaps on my newborn’s sleeper. At first, I told myself it was nothing. Maybe postpartum exhaustion, or just a pinched nerve. My denial lasted about five months. But my grip kept weakening, fine motor skills disappeared, and eventually I couldn’t ignore it anymore.

That’s how 2020 started for me: 31 years old, with a toddler and a six-month-old, being admitted to the University of Alberta Hospital and being told, alone, that I had ALS. A terminal illness with a short expiry date. My world changed forever on June 19, 2020.

But I am still me. I am still a wife. A mother. A badass. ALS has changed a lot in my life, but it hasn’t taken that away.

My kids are my everything, and they deserve a normal childhood. I run my household the best way I know how: by being present, by planning, and by making sure my family feels loved and supported. My care team is my chosen family. Through a a self-managed home care program, I get to live at home, where I belong. The women I’ve hired know me. They protect my peace. And they love my kids like their own.

The ALS Society of Alberta has had our backs since day one. From the Equipment Loan Program, which has helped me live safely at home with porch lifts, hoyer lifts, wheelchairs, walkers, you name it, to emotional support through groups and Zoom coffee chats, they’ve helped lighten a very heavy journey.

One of the most meaningful ways they support us is through the Debi Lefaivre ALS Youth Champions (formerly Support for Champions) program. Because of it, my kids can still play soccer, take swimming lessons, go skating and gymnastics. Their lives didn’t stop just because I got sick. And that matters.

I was part of a drug trial that didn’t work out, but I don’t regret it. I’ve also contributed to ALS research studies focused on early detection.

I’m now in year five of living with ALS. I’ve lost more function in my hands and arms. I’ve added new tattoos and lost the ability to put on mascara. But I’m still showing up. I’m still finding the positives. And I’m still fighting.

I’m honoured to be Wainwright Walk Together for ALS Ambassador for the 5th year now. Since 2021, we’ve raised over $60,000 for the ALS Society of Alberta! That money goes directly to helping families like mine. When I say it makes living with ALS possible, I mean it.

ALS may take a lot, but it hasn’t taken my spirit. As I like to say: “I have ALS, ALS doesn’t have me.” I’m still Jenna. Still a mom. Still a wife. Still the loudest laugh in the room. And I’ll keep living out loud, with love, and with a middle finger salute to ALS, until the very end.