Alicia Grace Chenier has been an active member of our community for several years, attending Brain Tumour Walks since 2019, volunteering with our SUPERKIDS program, sharing her story in 2020, receiving a Volunteer of Distinction Award in 2021, and serving as our Sudbury and Community Walk ambassador in 2025.

Please read on for Alicia’s brain tumour journey, from the story she first shared in 2020 to a recent update on her incredible progress.

It’s hard to capture an infectious giggle in words, but that’s exactly what you get when you speak to Alicia.

Living with a brain tumour has been a lifelong endeavor for her. She was diagnosed at just six months old, and has undergone six brain surgeries, experienced loss of vision, and complications from multiple medications. 

And yet, she laughs every day and is determined to inspire people by sharing her experience. 

“Living with a brain tumour is my normal”

“To most people, being called a survivor is a huge compliment,” Alicia says, “but for me, living with a brain tumour is my normal.” 

Her journey began when Alicia’s mom became concerned with her baby’s unexplained condition. She was “very sick as a baby,” Alicia says.

Her mom also noticed that Alicia couldn’t see from one eye. Multiple doctor visits later, Alicia received an MRI. Later that same day, they were flown by helicopter from their home in Sudbury to SickKids in Toronto.  

 At eight months old, Alicia had her first brain surgery. Her diagnosis was craniopharyngioma, a childhood tumour found in the pituitary area of the brain. A side effect of the surgery, vision in her left eye was completely gone, leaving her with tunnel vision in her right eye. 

Experiencing lasting side effects

When she was just two years old, another surgery resecting the tumour produced a scar that stretched from ear to ear. It was during this surgery that Alicia’s pituitary gland was removed, due to damage from the tumour. This led to lasting side effects and chronic illnesses that Alicia still manages to this day.

At age 15, Alicia had her third surgery to help relieve the daily headaches she had been suffering through. She arranged the surgery over March break, eager to get back to school afterwards so she could participate in a theatre show.

“I was very devoted to acting, so I wanted to go back as soon as possible,” Alicia says. “Looking back, I should have taken a longer break to recover.”

Changing course

Alicia’s tumour had been stable for seven years, though by 2021, “my brain tumour decided to party,” Alicia says.

She was in her last year of studying early childhood education when she required another surgery, followed by emergency surgery six months later to address complications from the prior surgery. Then, another six months later, Alicia underwent surgery again.

She had 30 radiation treatments over six weeks, in the hopes of slowing her tumour’s growth. It was during this time that Alicia decided to make a career change, enrolling in a disability studies program at Toronto Metropolitan University.

“I didn’t feel that the early childhood educator field was the accessible and inclusive career field that I thought it would be,” Alicia says.

Now in her third year of the program, Alicia’s focus is on disability in arts and culture. She works as an actor, filmmaker and producer, aiming to bring accurate and authentic disability representation to film and media.

“I’ve been acting since I was 10 and it’s always the passion I’ve gone back to,” Alicia says.

“I think, bringing that disability representation and for me, that representation of living with a brain tumour, is important. I never had that as a kid.”

Giving back

As much of her recovery from her most recent surgeries happened during the COVID-19 pandemic, Alicia really leaned into her advocacy and film work. She volunteered with Brain Tumour Foundation of Canada’s SUPERKIDS program, shared her story of hope in the organization’s webinar series, and produced a short film called The Author, which was shown at the International Storytelling Festival in Greece in 2024.

Most recently, Alicia participated in the 2025 Brain Tumour Walk, volunteering as the Sudbury and Community Walk ambassador.

“For me, the Brain Tumour Walk isn’t just about raising awareness, it’s about honouring every step of the journey—the pain, the hope, the fight, and the people who never let me walk alone,” says Alicia. “Community is what carried me when I couldn’t carry myself, and this walk is a reminder that none of us are ever in this alone.”

“A brain tumour diagnosis doesn’t have to stop you from doing the things you love”

Alicia continues to help others and make her mark on the world, and fortunately, she’s experienced a positive turn of events when it comes to her brain tumour.

“Radiation was hard, mentally and physically,” she says. “It’s been two years since radiation and my tumour is still shrinking, which is wild.”

Though Alicia has certainly had her share of challenging moments, she chooses to lead with love and not fear.

“I want people to know that a brain tumour diagnosis doesn’t have to stop you from doing the things you love and being with the people you love,” she says. “We can’t let that fear control us and hold us back from doing what we want to do in life.”

Check out Alicia’s Instagram page and her YouTube channel to learn more about her brain tumour journey and her current projects.