Losing a child without losing faith: the Catherine "Kat" Demes story
“If we don’t help kids survive, where is the world going?” Dina Bourdakos, Kat’s mom
It all began with a lazy eye. My Kat had to sometimes turn her head slightly sideways to be able to look straight at people. Maybe she only needed prescription glasses. That is why along with my husband Peter took her to an ophthalmologist. A mother knows best, right? What I didn’t know was that my sweet little 4-year-old girl had just begun a very difficult medical journey.
After pointless visits to ophthalmologists and pediatricians, one specialist stood out: Dr. Wise, an elderly man in Sherbrooke. “Will this doctor be able to help my baby?”
He said Kat’s head needed to be examined, not her eyes. We then took Kat to the Montreal Children’s Hospital for an MRI.
The diagnosis hit like a bombshell. Kat had Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable tumour with a median survival rate under 12 months. As the doctors spoke to me and my husband, I could barely hear the words. Brain tumor. Inoperable. Radiation. I could not bear the truth. The truth was my baby was going to die!
A lazy eye was now a question of life and death. Radiation treatments began. 30 sessions. Harsh on the body of a young and helpless child. But my hero never complained. Only once did she ask a question. It was a question that would break any mother’s heart. When her mouth started to be crooked, she asked “Mommy, when will my smile be straight again?” I stayed strong: “Your smile is perfect, my beautiful sunshine.”
The following weeks felt like a rollercoaster. Kat lost her ability to talk and walk. But a few months later, she began to seem like her old self. Good news: the tumor had shrunk! The family even went on a vacation – her Make A Wish vacation to Disney.
But real life soon caught up and the tumour began to grow. My sunshine spent the last weeks of her young life laying and sleeping on the family sofa. She did not want me or Peter to carry her to her bed. She was in too much pain. Yet, despite her suffering, she tried to remain happy. Why? Her aunts made sure her favorite toys, her beloved Lalaloopsy dolls, surrounded her. Kat passed away on July 22, 2015.
She was only 5 years old.
My family made a promise in memory of Kat. Her death would not be in vain. We will raise money in her honor for research into this deadly brain tumor at the Montreal Children’s Hospital.
That is when the idea of celebrity galas started. Expos Fest was born. We wished to raise $100,000, then $200,000 then $500,000. Our supporters were so incredible that we decided to go for 1 million dollars. That mission was accomplished in 2023.
Our work however was not done. On Gala Night, April 2023, we announced that we would raise 2 million dollars more to support The Kat Demes Pavillion at The Montreal Children’s Hospital. The Pavilion will house families of sick children in long term care. This is a first of its kind for The Montreal Children’s Hospital. It will be completely free of charge to the parents. It is well documented that the best medicine for a child is when families stay together.
We made a promise to Kat in 2016, we have not forgotten that promise.
Kat D DIPG Fund
Catherine’s father originally created the Kat D DIPG Fund at the Montreal Children’s that raises funds for DIPG research. It was a way to honour the memory of his lost child. It was also a way to raise awareness about the brain tumor that took his daughter’s life and collect funds to give new hope to children suffering from this terrible and fatal disease by supporting the work of renowned brain cancer researcher, Dr. Nada Jabado.
Dina’s nephew came up with the KAT D STRONG bracelets that the family wears and gives out at all their events.
Dina’s brother in law Perry took the foundation to a different level when he created Expos Fest, an annual charity fundraiser geared towards kids and fans of the Montreal Expos.
The family continues to fund raise so that one day there is hope when a family hears the word DIPG.