Hi, my name is Hugo. I am 17 years old, and I live with a rare genetic condition that causes a form of cardiomyopathy.
At 17, Hugo is already a visionary. While his peers are still trying to decide their life choices, he imagines web apps, projects galore and running his own business. This young man is driven by creativity, a love of learning, and the desire to build something that reflects who he is.
Few would guess that his go-getter energy conceals a rare disorder. Hugo lives with a genetic mutation that causes spongy myocardiopathy, a heart anomaly that could cause a sudden heart attack without the slightest warning. Since 2022, Hugo has worn a defibrillator-pacemaker that monitors his heart silently around the clock.
It was his father’s shocking cardiac arrest that revealed the presence of the mutation in his son. The children in the family were all screened; his sister was spared, but not Hugo. Within a few months, he had undergone heart surgery to have the pacemaker installed.
Now, the disorder is a fact of everyday life. Medication slows his heartbeat, which makes him short of breath during physical exertion. He must also take certain precautions to protect his pacemaker. In spite of it all, Hugo has his sights set on the future and displays an astonishing level of maturity for his age. His parents admire his ability to face challenges without backing down before issues beyond his control.
He recently experienced a milestone event of which he’s especially proud: getting his driver’s license. This is a win that represents much more than a permit to drive; for Hugo, it’s proof that the future holds countless opportunities.
His motto sums up his outlook nicely: “Live for yourself, not for others.”
What he loves most is spending time with the people he loves, whether that involves camping, boating or just hanging out with family. His fondest dream is a simple one: to be able to continue turning his ideas into reality.
By participating in the 24h Tremblant, Hugo wants to contribute to the advancement of research so that future generations of children living with a cardiac disorder can look confidently to the future. Because deep down, while the heart might set some limits, dreams do not.
It's all made possible by the CHU Sainte-Justine Foundation!
For the families of our child heroes, participating in the 24h Tremblant is an opportunity to celebrate life, courage and hope.
Thank you for being an important part of this vast wave of solidarity!
You’re giving children hope for a brighter future through various programs and research projects funded by the 24h and its beneficiaries: Fondation Charles-Bruneau, CHEO Foundation, CHU Sainte-Justine Foundation, The Montreal Children’s Hospital Foundation and Fondation Tremblant.
Your donations matter. They make a real difference in the lives of Hugo and thousands of children.