An Edmonton boy who has been diagnosed with a rare form of terminal brain cancer called diffuse intrinsic pontine glioma (DIPG) was given some incredibly special memories on Wednesday.
Crawford Plains Elementary School hosted a fundraiser Wednesday called “Oilers Fanfare for the Cure.” The school set a goal of $1,000 to donate to The Cure Starts Now for DIPG — a charity designed to help find cures for rare forms of brain cancer.
Karter Bourgeault, the six-year-old boy with DIPG, is a huge Edmonton Oilers fan. Hunter the Oilers mascot attended the event and even helped shave the heads of children who had raised money for DIPG research.
“The school is doing a fundraiser to help get more out there for children with brain cancer, because unfortunately, children’s cancer is one of the lowest-funded types of research … but yet it’s one of the highest-killing cancers in children,” said Nicole Fraser, Karter’s mom.
“So (Oilers player Tyson Barrie) came to the school in the beginning of the year and Karter and him bonded. He did great things for us. And then he got to meet a bunch of the other guys — Evander Kane and Nuge (Ryan Nugent-Hopkins) and (Connor) McDavid and (Leon) Draisaitl and (Devin) Shore (and Darnell Nurse) and all of them.”
This isn’t the school’s first fundraiser for Karter. Staff and students hosted the Terry Fox run in the fall, where 50 per cent of the donations went to finding a cure for DIPG.
“Our school has been beyond amazing. At the beginning of the year, when they did the Terry Fox run, they donated half of the donations to brain cancer research.
“They go above and beyond for us and for Karter — Karter’s happy place is that school. So, it definitely pushes him to do better and stuff and to be around his peers,” Fraser said.
Many of Karter’s classmates volunteered to dye their hair or shave their heads in support of him. One of Karter’s Grade 1 classmates went above and beyond for him.
“One of our little guys in Grade 1, Giles, is Karter’s friend. He went over to his parents and he talked to them about the best way to raise money and they decided to make a video. And, you know, those big, big puppy eyes and the heartstrings, certainly, a little Grade 1 is making a video to cut off his beautiful blond locks. Certainly got the hearts of people. And as of this morning, he brought $5,270 all on his own. So, he’s sporting a new haircut,” said Lisa Nachtigal, principal at Crawford Plains Elementary.
The school has also been doing fundraisers during the NHL playoffs and has raised over $10,000, including the funds raised on Wednesday.
“My heart is bursting. It’s a community coming together for such a great cause,” Nachtigal said. “And it just really shows all the support of our kids and our families. And it really speaks to how tight-knit of a community we are and how we are always striving to make the day a better one for all of our friends at our school.
“I just really love the power of community and students and parents and teachers coming together with our community to rally behind difficult times and making sure that our families all feel really supported.”
Karter was diagnosed with DIPG in July of 2022 following a bout of paralysis on his right side. He was initially told that he was suffering from Bell’s palsy — but to his parents’ dismay, he continued to deteriorate. He had begun to struggle to talk, walk and more. That’s when his parents brought him to the Stollery Children’s Hospital, where he was diagnosed with DIPG following an MRI.
Karter’s parents were given very difficult news – Karter had a rare form of cancer that had no cure, no treatments and a life expectancy of nine months to a year. Karter has been going through radiation therapy and using natural medicine, which Fraser says has provided some improvement.
Karter’s abilities deteriorated very quickly at the start of his illness, so he still struggles to do the things that most kids do, but his school has found many ways of making sure Karter is included and supported.
“He’s deteriorated pretty quickly with his ability to function in normal ways, you could say. But he continues to come to school just about every day to the best that he can. And we’ve been trying out some adapted activities,” Nachtigal said.
“Showing that he can still do lots of things. And the other kids are experiencing that (too). And he certainly has lots of friends at school.
“He’s learning to read with them and practising his writing skills and just loving the school experience.”
The fundraisers raise money for research to help find a cure for Karter. His family has set up a GoFundMe to help with the everyday expenses of living.
“I had to stop working,” Fraser said. “Richard’s (Karter’s father) been able to be off with him since he got diagnosed and then I’ve stopped working. And then we are looking into some more trials. Plus, he wants to do things to enjoy his life, right. And we want to be able to do that for him.”
Karter and his family did travel to Washington, D.C., to join a trial for an experimental treatment. However, due to the location of his tumour and the fact that he has a lesion on his spine, he did not qualify to be a part of the study.
Karter’s family is constantly working on trying to find a cure or treatment for him but also all children with brain cancer.
“We have to be strong for him, right? So, we just push day by day and do what we can, constantly looking for more options,” added his mother.
You can follow Karter’s journey by following him on Facebook and Instagram. To help the family, donations can be made to their GoFundMe.