Gordie

A Manitoba family now has hope and the opportunity to make meaningful memories together following a terminal cancer diagnosis, thanks to life-changing research done right here in our province.

“They told us there’s no treatment. Go home, make memories with your child. That’s all you can do.”

Sarah very clearly remembers the moment when she and her husband Ryan found out their son Gordie has Diffuse Intrinsic Pontine Glioma (DIPG), a rare, aggressive, and fast-growing brain tumour.

“I yelled and said I don’t want to hear anymore—I’m done,” says Sarah. “It was just a gut reaction.”

Gordie was just three years old and recovering from a bout of COVID-19 when he started slurring his speech and having trouble smiling. He was initially treated with steroids for Bell’s palsy, which helped his symptoms for about a week.

The family was living in Winkler at the time but visiting Sarah’s parents in Brandon, Manitoba, when Gordie’s condition took a turn. He became very clumsy and started throwing up, so Sarah took Gordie to the local emergency room where a CT scan revealed a mass, and doctors referred them to HSC Children’s Hospital in Winnipeg.

“Within 24 hours we had a diagnosis,” says Sarah. “It’s supposed to be such an aggressive cancer that they couldn’t promise us his fourth birthday. It was a hard grieving stage but Ryan and I both decided we wouldn’t give up. We will fight and we’ll try anything we can, in the most positive way we can.”

As Gordie began radiation to slow the tumour’s growth as much as possible, the family leaned on their team at HSC Children’s and connected with scientists at Children’s Hospital Research Institute of Manitoba (CHRIM), like Dr. Eric Hall and Dr. Issai Vanan.

Dr. Hall is leading a project using advanced microscopes to look closer than anyone has before at how cells communicate with one another, and Dr. Vanan is the team’s clinician partner. With CHRIM’s cutting-edge equipment, they can see that cells produce long, almost invisible threads called cytonemes to contact much farther away cells and trigger cancer growth.

“By looking at cytonemes and in targeting them, we’re trying to see if disrupting these connections and this signaling network could impair how the tumours grow and progress,” says Dr. Eric Hall. “We’re working really closely with pediatric oncologists on this to move from the fundamental science to having clinical applications faster than we would usually.”

Gordie’s family hosts Gordie’s Walk every year in Brandon, where they live now, and raises funds for DIPG research, including Eric Hall’s project. Sarah says they feel very connected to Eric and his team, especially after taking a meaningful tour of the lab at CHRIM.

“We feel like we have a huge team behind us and that we know if Gordie starts failing, that we have a big group to help us out,” says Sarah. “We can’t thank them enough. The fact that they want to be so connected with us means the world to us.”

“It’s not just about the research; it’s also about providing hope and impact in
people’s lives as well,” says Dr. Hall.

CHRIM’s clinical trial capacity and connections also allow patients like Gordie to access emerging therapies. In 2022, shortly after his diagnosis, Gordie started on trial medication intended to prolong his life and has also worked with researchers to include medicinal cannabinoids that have no psychoactive effects in his treatment.  

“It is such a relief to know we’re not alone, that somebody that can actually make a difference is helping us,” says Sarah.

Gordie turned eight in June of 2026 and has been stable for four years. He continues to visit HSC Children’s for an MRI every 12 weeks, and his family is focused on making the best of the time they have with him.

“It’s been nice the last couple of years to actually live life and not be so worried about what ifs,” says Sarah. “We’ve tried to be positive and raise him like he’s a normal kid.”

In the summer, Gordie enjoys baseball, and in the winter, hockey. He also loves playing pretend with his younger sister Molly and playing mini sticks with their baby brother Reggie.

“We’ve been begging for time and praying for time and we’ve gotten it,” says Sarah. “Hopefully we continue to keep having it.”