Michal & Jackie | Toronto, ON
Diffuse Intrinsic Pontine Glioma (DIPG)
“Our daughter Isabelle had this big outgoing personality. Wherever we went, people were drawn to us. She’d smile and wave and talk to everyone. She loved school, especially helping the other kids. At home, she’d pretend to be a teacher and read us stories before bed. She was this amazing little actress, in full teacher mode, chastising us for giggling. It would be nearly impossible to get her out of character.
The first sign that something was off was in March 2020, when Isa was three. We’d taken her out for a ride on her scooter, but she couldn’t keep it on the sidewalk – despite being quite proficient the summer before. And then at Easter, she was stumbling during the egg hunt. We called our pediatrician, who referred us to SickKids. We were being seen by neuro-oncologists, so we suspected that she had some kind of brain tumour. We expected to talk about treatment options. We were completely blindsided when the doctors told us to go home and make memories, and that there was nothing they could do.
Isa had Diffuse Intrinsic Pontine Glioma (DIPG), a highly aggressive brain tumour. She was diagnosed in April 2020 at the peak of the pandemic. Isa was so sociable, but we couldn’t even plan her a play date – everyone was too scared to come over. And we wanted to create these amazing memories for her – Disneyland, trips, museums – but everything was locked down. What Isa wanted most, though, was for us to just be together.
Her cancer progressed rapidly and she passed away in December 2020.
DIPG is a horrible cancer. It takes away all of a child’s abilities. And what’s especially sad and frustrating is that the prognosis hasn’t changed in decades. Our government hardly allocates any money to DIPG research. There’s nothing available in Canada – no clinical trials, no medication breakthroughs, no hope. We’ve been advocating for this and lobbying the government to do better. We’re also working with Brain Cancer Canada, and other families, to raise essential funds.
Although a disease may be rare and thus considered ‘small’, it can still have a huge impact on so many people.”
Brain Cancer Canada is a national charity that supports people diagnosed with primary malignant brain tumours by funding research, technology and treatment. Brain cancer research is drastically underfunded. Despite its incredibly low survival rate, it receives less than 3% of the total funding for cancer research.
With generous support from donors like you, Brain Cancer Canada is helping bridge the gap between ground-breaking research and life-saving treatments. Click here to donate.