Stepping Together for Our Son
MARCH 25, 2024
Our journey alongside our 9-year-old son, Loïc, who lives with a rare mutation of cystic fibrosis, has been both a challenge and an enlightening experience. Our daily lives are filled with routines aimed at managing Loïc’s condition—routines that include countless medications, therapies and constant infections. Yet, it’s the simple pleasures of childhood that CF often threatens to overshadow.
As a parent, it’s difficult to hear him say that he wants to play outside instead of doing his respiratory therapy. Countless park visits with his brother cut short by fatigue, the birthday parties missed due to hospital stays, and the playdates cancelled to prevent infections are stark reminders of what CF has taken from him and our family.
Living without access to modulators like Trikafta has placed additional obstacles on our path, highlighting the urgent need for continued research and accessibility to treatments for all Canadians with CF, regardless of their genetic mutations. The promise of such treatments brings hope, not just for Loïc, but for every child and adult with CF.
This year, as we gather at the Walk To Make Cystic Fibrosis History on Sunday, May 26, we’re not just walking for the sake of research or treatment advancements; we’re walking for the moments of childhood that every child deserves to experience without the burdens of disease. We’re walking to ensure that parents can dream of a future for their children that isn’t controlled by CF.
Our involvement in the Walk, from being ambassadors to leveraging social media for fundraising, has been driven by one goal: to build a world where CF no longer steals moments, futures or lives. The support from our family, friends and the CF community has been overwhelming, turning the Walk into a token of hope for a better future.
But our work is far from over. As we step toward a future where no child misses out on the joy of childhood because of CF, we need your help more than ever.
Register, fundraise and walk with us, not just for Loïc, but for every Canadian living with CF. Let’s walk together, so no child has to miss out on the moments that make childhood so precious. Join us, and let’s make CF history together. Register and fundraise for the Walk To Make Cystic Fibrosis History now!
Sandra Gélinas