Chanelle’s Journey with Cystic Fibrosis 

Hello, I'm Chanelle, a 26-year-old from Cornwall, Ontario. Diagnosed with cystic fibrosis (CF) at age 7, my life transformed into a series of treatments, doctor's appointments and hospital stays. Despite these challenges, including the removal of my right lung, I've found joy in creativity, making custom decor, and the companionship of my best friend, my dog Everest.

Participating in the Walk To Make Cystic Fibrosis History with friends and family has been a profound experience for me, bringing awareness to CF and fostering community support. My favourite memory of the Walk is the amount of involvement from the community. It brings me hope to see thousands of people from across the country come together to make a difference for Canadians with CF.

CF has been a journey of "you wouldn't think it would happen to you until it does." I had good lung function initially, but over the years, my health deteriorated. Despite the advances in CF research and medicine, I found myself in the minority who cannot access groundbreaking treatments like Trikafta due to it not yet being approved for my specific genetic mutations in Canada. Fortunately, through generous donations from the community, I was able to start Trikafta in November 2023. Since I started this drug, my pulmonary function test increased from 28% to 44%, I’ve been able to gain and maintain a healthy weight, and I’m able to recover from colds without the use of antibiotics. What’s more, I welcomed a beautiful baby boy to the world in August 2024!

This year, I dream of more outings and activities, of making happy memories despite the shadow of CF, and of watching my son grow and experiencing all of his firsts. But my biggest hope is for a future where no one has to face the limitations and uncertainties that come with this disease.

Imagine a world where we can say we've ended CF. For me, it would mean a second chance at a better life. It’s heartbreaking that in Canada, there are people with CF who do not have access to current life-saving drugs, simply because of their specific mutation or financial barriers. The frustration of being so close yet so far from a potentially life-changing treatment is indescribable.

I encourage you to take a step toward the next advancement in CF research by joining us for the 21st edition of the Walk To Make Cystic Fibrosis History on Sunday, May 25. Please register today and help turn our dream of a world without CF into reality.

Chanelle Lafleche