Mario Cleroux Ice Bucket Challenge Video
Click to watch Mario Cleroux’s Ice Bucket Challenge

Five years ago, when the ALS Ice Bucket Challenge went viral in 2014, Mario knew very little about ALS, and had no idea how it would affect his life. Because of a co-worker whose dad was living with ALS, Mario completed the ALS Ice Bucket Challenge. “Once I got tagged in a post there was no doubt in my mind about participating to help raise awareness and above all else, to raise funds,” says Mario. “I didn’t want to do the typical challenge so after much debate I decided to use the theme song from Flash Dance with the bucket of water dumped over me on a chair. My friends and family got such a kick out of it. It’s still being talked about to this day!”

Mario Cleroux, 48, and his long-time partner, Steven, are caring for their two aging mothers in their home in Ottawa. Mario’s mom, Yolande, moved in with her son in May 2018 after her husband passed away. “It was a no-brainer,” says Mario. “After all, you only have one mom.” At the time, Yolande was in good health, but in the summer of 2018, she began to complain about problems with her voice. Then she developed slurred speech and problems breathing. In January 2019, she was diagnosed with ALS.

Mario & Yolande Cleroux Jamaica
Mario, his mother Yolande & his daughter in Jamaica, 2019

Mario and his mom have always been close. “I’m a mama’s boy,” he says with a chuckle. He has many fond memories of her but what stands out as a watershed moment was a time when he was struggling with his sexuality. His mom was the first person he confided in and her immediate response was exactly what he needed to hear. She said, “You keep your head up and you be who you are. I’m your mother and I’ll always love you.” The bond between mother and son has remained strong all these years. “My mom’s always been there for me,” says Mario. “She’s my role model – the glue keeping the family together.”

Now that Yolande is living with a rapidly-progressing form of ALS, there is less and less opportunity to create new memories. Adapting to the constant and unpredictable changes is difficult. Caregiving comes naturally, but it’s hard for Mario to witness his mother’s decline. “ALS is one of the toughest diseases out there,” he says. “People need to know this.”

Living in the presence of ALS every day, Mario wants everyone to know that ALS is still robbing families of precious time together even though medical research has made tremendous headway since the first Ice Bucket Challenge was launched. “It’s hard because there’s still no cure,” he explains. “We have to keep the pressure on. We have to find a cure.”

Carlos, his partner and his mother at the Walk to End ALS in Ottawa, 2019.
From left to right: Steven, Yolande & Mario at the Walk to End ALS in Ottawa, 2019

Without the support of ALS Canada and his life partner, Mario says he doesn’t know how he would deal with the challenges of full-time caregiving. He appreciates assistive equipment provided by ALS Canada’s Equipment Loan Program, relieving some of the financial burden, as well as the support he receives from his ALS Canada Regional Manager, Lianne Johnston. She suggested he attend a caregiver course he says provided practical information that was invaluable in the early days of caring for his mom. “Lianne lives five minutes around the corner from me,” says Mario. “She’s my ‘go-to’ person. She’ll fight to find answers for you. ALS Canada has been an unbelievable help that way.”

For now, Mario is working hard to make every moment count. “I want to make sure my mom’s as comfortable as she can be in the time she has left, and that she has her dignity. That’s what I’m focusing on,” he explains. “Small things, like manicures and going to the hair dresser so she looks and feels good.”

Yolande Cleroux with her 3 grandaughters in Jamaica
Yolande Cleroux with her 3 grandaughters in Jamaica

In February, when he realized how quickly his mom’s symptoms were progressing, Mario booked a family trip to Jamaica with his daughter and his two nieces. He’s glad he seized that opportunity because now, that window has closed. “The need to find a cure is urgent,” he says. “I’m sharing my story to raise awareness so we can change things, and if I can’t think of something even more fun and creative, I will jump at the chance to do the ALS Ice Bucket Challenge again!”

Mario’s message is crystal clear. It’s about time to stop ALS from devastating lives – so no one has to live through or witness its distressing trajectory.