National Diffuse Intrinsic Pontine Glioma Awareness Day Bill

Moved second reading of Bill S-244, An Act respecting National Diffuse Intrinsic Pontine Glioma Awareness Day.

She said: Honourable senators, I am deeply honoured to rise today as the sponsor of Bill S-244, An Act respecting National Diffuse Intrinsic Pontine Glioma Awareness Day. This enactment seeks to designate May 17 of each year as Diffuse Intrinsic Pontine Glioma Awareness Day, a day more commonly known to a community of grieving but resilient families as DIPG Awareness Day.

Before I begin, I wish to acknowledge member of Parliament Joël Godin, my colleague in the House of Commons. His tireless advocacy on behalf of the families in his riding and across Canada has been the heartbeat of this legislative journey.

Diffuse intrinsic pontine glioma, or DIPG, is not just a medical term. It is the leading cause of brain tumour deaths in children in Canada. It most often strikes children between the ages of 5 to 7 but can occur in younger children and teenagers.

Diffuse intrinsic pontine glioma is an aggressive, inoperable tumour that embeds itself in the pons, the part of the brainstem that controls vital life functions. It is uniquely cruel because of its locked-in nature. As the tumour grows, it gradually shuts down a child’s ability to walk, to use their arms, to swallow and eventually to breathe. Yet throughout the physical decline, the child’s cognitive function remains intact. They are fully aware. They are trapped inside bodies that are failing them while their minds remain as bright and observant as ever.

I recently met with three mothers who lived through this nightmare. Their stories are not just testimonies. They are a call to the conscience of this chamber. Florence was 5 years old. Her mother, Stéphanie, described the wall of silence she hit upon diagnosis. In Canada, she was told that there was nothing to be done. As a francophone, Stéphanie faced the double burden of navigating a complex medical landscape while paying out of pocket for translation services just to seek out clinical trials in the United States.

She spent her daughter’s final months, not just being a mother, but acting as a fundraiser, a translator and a researcher, desperate to find a crack of light in a dark room.

Trinity was five and a half years old. Her mother, Tammy, recalled the devastating irony of Trinity’s first week of kindergarten. What should have been a week of new backpacks and excitement turned into a hospital visit for “odd symptoms.” The diagnosis was a death sentence, delivered in a whisper: “Go home and make memories.”

Isabelle was only three and a half years old. Her mother, Jackie, remembers an Easter egg hunt where Isabelle began to limp. From a joyful hunt for eggs to the halls of SickKids in Toronto, the transition was instantaneous and brutal.

Jackie pointed out a fact that should haunt every researcher and policy-maker: American astronaut Neil Armstrong’s daughter died of DIPG in 1962. The prognosis and standard of care offered to Isabelle in 2021, 60 years later, were virtually identical.

Honourable senators, we live in an era of unprecedented medical advancement. We have mapped the human genome and sent rovers to Mars. Yet, for a child diagnosed with DIPG today, the medical advice remains fundamentally the same as it was during the space race: radiation to buy a little time and then palliative care. Go home and make memories.

As Dr. Mark Souweidane, a world-renowned pediatric neurosurgeon and researcher, has stated:

DIPG is the “Mount Everest” of pediatric oncology. For too long, we have accepted that it is unbeatable. But the reality is that the lack of progress is not due to a lack of will — it is due to a lack of resources and a lack of eyes on the problem.

Awareness is the fuel for research. For decades, DIPG remained in the shadows because it is “rare.” But for the families of the children I am about to name, it is not rare. It is 100% of their reality.

One of the mothers who lives in a rural town in Newfoundland, only 10 minutes from her home, met another mother who suffered the same fate with a child who was diagnosed and died of DIPG. Only 10 minutes from each other.

Critics sometimes argue that awareness days are merely symbolic. But I disagree, and I know our chamber disagrees. In the world of rare diseases, visibility is a form of survival.

Coordination through a national day allows hospitals to sync their data. When families are aware of trials, enrolment increases, providing the “n” — the sample size — that researchers desperately need to find a breakthrough.

A designated day provides a hook for national fundraising, which fills the gap where public funding often falls short for rare pediatric cancers.

May 17 is already recognized internationally. By aligning with the world, Canada joins a global network. We ensure that a discovery in Lyon or London reaches a bedside in Laval or Lethbridge faster.

I wish to read into the record once again — because I did table this bill in the last Parliament — the names of the children who inspired this bill. These are not statistics. They are the dearly departed children and grandchildren of Canadians who are watching and listening to this debate in the Senate. I ask that these names be forever etched into the Hansard of the Forty-fifth Parliament: Adaura Cayford. Alexandra Brodeur. Alicia Jolicœur Vella. Claire Sommer. Ellie Bonnett. Florence Gagné. Gabriel Rey. Gordie White. Isaac Dupré. Isabelle Borkowski. James Lavoie. Jordana Fiorini. Jordyn Chan. Julia De Luca. Justin Brouwer. Kara MacLellan. Karter Bourgeault. Kayge Fowler. Maika Lefebvre. Marie-Ange Forest. Matthew Isaak. Mia Bordeleau. Myah Windrim. Naomi Nevesely. Nathan Froese. Neil Ashamock. Nelina MacPherson. Noah Mercier. Olivia Hirsch. Ronan Smyth. Ronny Betterley. Sarah Kim-Bouchard. Théo Daigle. Trinity Ellsworth. Tyler Palmowski. Victoria-Rose Bilodeau. Willow Lanto.

I know there are more names to add because several years have passed since this list was compiled.

Honourable senators, we often talk about the “future of our country.” For the 37 children I just named, and those I did not name, that future was stolen. It was stolen by a monster that hides in the brainstem, and it was stolen by 60 years of collective silence.

We cannot bring these children back. We cannot undo the trauma of the mothers, fathers and grandparents who watched their children’s lights go out one function at a time. But we can decide that their suffering will not be in vain.

When we eventually vote on Bill S-244, we are not just voting for a date on a calendar. We are voting to end the “go home and make memories” era of Canadian medicine. We are voting to tell every parent currently sitting in a pediatric oncology ward that their child’s life is worth more than a shrug of the shoulders and a 60-year-old protocol.

I ask all honourable senators for your support of this important bill so that every May 17, the buildings of this country glow with the gold and grey of brain cancer awareness. Let it be a day on which we admit that, while DIPG is currently unbeatable, it is not — and must never be — acceptable.

The mothers of Florence, Trinity and Isabelle did the impossible: They loved their children through the unimaginable. Now it is time for us to do the possible. Let us give this community the recognition they have earned in blood, sweat and tears.

Let May 17 be the day we stop making memories and start making history.

Thank you.