Location

Quebec City, Que.

Role

2023 Brain Tumour Walk Co-ordinator and fundraiser, Quebec City

Five minutes at a time.

That is how Stéphanie Morissette managed through what no parent should ever have to experience, and it’s the advice she gives to other parents navigating the same devastating path.

Stéphanie’s five-year-old daughter, Florence, was diagnosed with a diffuse intrinsic pontine glioma (DIPG) in 2021. This aggressive, malignant tumour that develops in the brainstem took Florence’s life only nine months after her diagnosis.

A doctor treating Florence suggested for Stéphanie to focus on the next five minutes, which is still what helps her move forward in difficult times.

“‘In the next five minutes, what are you going to do?’” Stéphanie says the doctor asked her. “‘Do you need to go to the bathroom? Do you need to take a shower? Do you need to eat something? Do you need to just sit down and cry?’ And I was like, ‘Yeah, I do.’”

So, she’d focus on the next five minutes, and then the five minutes after that.

“Then, you might find you can do five hours and then five days and then five weeks,” Stéphanie says. “I’m juggling between five minutes and five days at the moment. But it’s okay to go back to five minutes at a time.”

She’s also channelled her energy into raising funds and awareness for brain tumour research.

“For me, it makes no sense that a child and their family are still receiving fatal diagnoses,” Stéphanie says. “Brain tumours are often very aggressive and not enough money is dedicated to their research. Without research, many more Canadian families will go through the heartbreaking process we had to go through. This is why I’m trying as much as I can to raise awareness and funding for research.”

In 2021, Stéphanie was in New York supporting Florence through treatment as her friends organized a virtual Brain Tumour Walk back home. She also found community through a Facebook group she created, that has reached more than 12,000 followers nationwide. When Florence passed away in 2022, Stéphanie resolved to continue her fight.

She spearheaded the first-ever Quebec City Brain Tumour Walk in 2023, which raised $33,000—111 per cent of the Walk’s fundraising goal. Stéphanie raised $4,335.55 through her own team, L’armée de Florence, and garnered the attention of MP Joël Godin, who was one of the 200 attendees at the event. Joël has been instrumental in pushing ahead Stéphanie’s petition, so that May 17 may be declared official DIPG Awareness Day in Canada.

Stéphanie is no stranger to taking the stage following her daughter’s diagnosis, though it’s something she reluctantly accepts. Having spoken at last year’s Brain Tumour Walk in Quebec City, Stéphanie found the experience bittersweet.

“It was very emotional for me,” Stéphanie recalls. “I was sad that I had to be there and sad that my daughter couldn’t be there. But I was also very grateful. We had friends, family, and even my daughter’s medical team participating. I was so full of hope to see all these people coming together and having the same goal.”

Stéphanie’s efforts and commitment to furthering brain tumour research have earned her a 2024 Volunteer of Distinction Award, which is given each year to volunteers who embody the spirit of volunteerism. Recipients of this award are considered leaders and ambassadors who give freely of their time and energy to help reach every Canadian affected by a brain tumour through support, education, information, and research.

Stéphanie learned of the recognition the same week of what she refers to as her daughter’s “angelversary.”

“I wish this never happened to me,” she says. “But with the cards I’ve been given, I’m very grateful and thankful for this honour.”

This year’s National Volunteer Week theme, Every Moment Matters, is one Stéphanie knows all too well.

“You have to make every moment matter, because you never know what’s next,” she says. “No gesture, no step, no action is too small. Anything and everything makes a difference!”

Stéphanie is carrying that perspective with her as she continues to honour Florence’s memory.

“Her life was short, but it was full,” Stéphanie says, describing Florence as spicy and fearless. “What happened to her wasn’t fair—it will never be fair. But I’m here. And I need to fight in her memory.”