Édith and Jean-François' Testimonial

As parents, we can’t help but want great things for our children. But in our family, we try not to think about the future. It’s too painful.

When Félix-Antoine was 2 years old, he was referred to a pediatrician at the Children’s because his head was larger than normal. That’s when Dr. Johanne Morel discovered his liver and spleen were abnormally large. We never could have anticipated that these signs pointed to a frightening and cruel diagnosis.

Our son suffers from Hunter syndrome, a rare degenerative disease that, to this day, spares no one.

Imagine your house gradually filling with waste, waste that piles up each day, and there is nothing you can do to stop it. That’s what our 4-year-old son has to live with. The waste is slowly accumulating throughout his body, causing progressive damage to every organ system, including his eyes, ears, lungs, heart and bones. Two thirds of boys with the disease also suffer from an accumulation in the brain which causes a gradual loss of development milestones. Recent results suggest that Félix-Antoine’s brain is affected too, so his condition will decline more rapidly.

Thanks to the support of donors, the Children’s has the clinical teams and expertise needed to provide our son with the highly specialized care he needs.

Each week, Félix-Antoine receives intravenous enzyme replacement therapy to slow the disease’s progression and alleviate symptoms. But they still don’t have a way to treat the devastating impact of waste that accumulates in the brain.

Félix-Antoine’s physician Dr. John Mitchell is working tirelessly with his research team to find ways to understand how the cellular waste causes damage to the brain. Understanding this process is the first step in developing new therapies to prevent the accumulation in the brain. It’s the next frontier, and we’re hanging onto hope.

Your gift today will help support research that could save our son’s life. You can help. It’s not too late.

Our son is doing well for now, so we try to appreciate the time we have together. It might sound clichéd, but every moment is precious. We find peace in these moments. And in the knowledge that you’re there for families like ours, for whom your donations are our only hope.

Thank you for your generosity,
Édith and Jean-François,
Félix-Antoine’s parents