James and Leroy: A Journey of Hope and Advocacy in the Face of Cystic Fibrosis
JANUARY 14, 2025
James Fournier never imagined that his life would take such a dramatic turn when his son, Leroy, was born in 2018. It was a moment filled with joy and anticipation, quickly overshadowed by the medical challenges that lay ahead. Leroy was born 2 months premature with a rare tumor at the base of his spine. At just three days old, he underwent his first surgery. The initial relief of a successful operation was short-lived as he struggled with supplemental oxygen, leading to the eventual diagnosis of cystic fibrosis (CF).
“Learning that Leroy had cystic fibrosis was a life-changing moment,” James recalls. “It felt like the ground had been pulled out from under us. But it also marked the beginning of our journey to fight this disease, not just for Leroy, but for everyone affected by it.”
The diagnosis of cystic fibrosis came as a profound shock to James and his family. It was a turning point that redefined their lives in ways they could never have anticipated. “When the doctor told us about Leroy’s condition, it was like everything we knew about our future was suddenly uncertain,” James explains. “The fear and uncertainty were overwhelming. We had to quickly educate ourselves about cystic fibrosis, learning about its impact on the body, the treatments available, and what we could do to ensure Leroy had the best possible quality of life.”
James’ involvement with Cystic Fibrosis Canada began with a simple act: following their Facebook page. This small step grew into a significant commitment, with James participating in fundraising events and becoming a community reviewer. Community reviewers are people with personal or family experience with CF who review the research proposals that Cystic Fibrosis Canada receives and provide perspectives to help inform which projects receive funding.
James emphasizes the importance of community reviewers in the evaluation process, stating, “As community reviewers, we are the experts in the lived experience of CF. Our input goes beyond the scientific perspectives and brings a crucial dimension to the funding decisions.”
Reflecting on his role with Cystic Fibrosis Canada, James notes, “Being a community reviewer allows me to contribute to the fight against CF in a meaningful way. It’s not just about the science; it’s about the people, the families, and the real-world impact of the research we fund. We help ensure that the projects funded truly reflect the needs and hopes of the CF community.”
Leroy’s health has been a rollercoaster, with multiple surgeries and a severe health crisis at one year old that resulted in brain injury, affecting his motor and speech abilities. Despite these challenges, Leroy’s intellectual capabilities shine brightly. “Leroy is exceptionally bright. He reads and knows the alphabet and numbers far beyond his age. His determination and intelligence inspire us every day,” James shares.
James’ dedication to the CF cause is fueled by his personal experience and the unyielding spirit of his son, Leroy. “Cystic fibrosis has changed our lives in profound ways. It’s been a tough journey, but it’s also been filled with hope, resilience, and a sense of purpose. We are determined to make a difference, for Leroy and for all those affected by this disease.”
As James and his family continue their journey, they remain committed to advocacy, research, and support for the CF community. Their story is one of resilience and hope, a testament to the power of love and determination in the face of life’s greatest challenges.
Are you interested in becoming a community reviewer, like James was, and other opportunities for your lived CF experience to inform research and other initiatives? Sign up for Elevate, our program that connects people with lived CF experience with meaningful input opportunities at Cystic Fibrosis Canada and other organizations like research and academic institutions.