Holding onto Hope: A Newly Diagnosed Family’s Journey with Cystic Fibrosis

When Marie-Joëlle and her partner, Alexis Martel, welcomed their daughter, Lucie, into the world, they never imagined their first year as a family of four would bring such a life-changing diagnosis.

Lucie, now one year old, was diagnosed with cystic fibrosis (CF) through newborn screening. Her parents remember that moment vividly – and the emotions that followed.

“The entire family was absolutely shocked,” Marie-Joëlle recalls. “I was terrified; I imagined the worst. I didn’t think she would have a great quality of life.”

For Alexis, the news carried its own weight. “I felt guilty for passing on a disease to her,” he admits. “It was like watching my family’s dreams and opportunities vanish into thin air.”

But as the months passed, the couple learned that life with CF, while not easy, could still be filled with joy, laughter, and hope.

At home in Blainville, Quebec, the family of four – including Lucie’s big brother Hubert – fills their days with simple pleasures like long walks, good meals, and spending time together. But if those early days, it was hard for Marie Joëlle to imagine how CF treatments would fit into their busy life. “I asked Lucie’s medical team if I would have to quit the job I love to take care of her full time,” she says. “I couldn’t see how it would work out.”

Slowly, routine and resilience took root. “You have to go through it to understand and adjust,” she says. “Every new treatment is hard at first, but you eventually get used to it – even make it pleasant.”

Still, certain worries linger. “That hardest thing for me now is protecting her from exposure to Pseudomonas,” she explains. “It’s everywhere. Finding the balance between protecting her and letting her explore is tough.”

For Alexis, navigating this new reality meant reassessing priorities. “I took a break from work so we could all process the diagnosis together,” he says. “Eventually, I changed jobs to have more time with my family.”

Lucie is the only person in their family with cystic fibrosis, and while her diagnosis brought challenges, it also brought unexpected blessings.

“We received an outpouring of support from those closest to us – and even from people we hadn’t spoken to in years,” says Marie-Joëlle “We actually reconnected with distant relatives who offered their support.”

As Cystic Fibrosis Canada celebrates 65 years of progress, Marie-Joëlle and Alexis both share deep gratitude and determined hope.

“When I think of the future, I am full of hope for people living with CF,” says Marie-Joëlle. “I really believe Lucie will be able to lead a marvellous life. Yet, I can’t help but fear the worst if she doesn’t tolerate the CFTR modulators or if we lose access to them.”

For the couple, the vision of a future where all Canadians with cystic fibrosis live without limits perfectly captures their hopes for Lucie. “I want her goals and choices to be her own and not dictated by her diagnosis,” says Marie-Joëlle.

Despite incredible progress in recent years, Marie-Joëlle and Alexis know the fight against CF isn’t over. “Even those who respond to treatments can still face complications – infections, liver disease, diabetes, etc. We can give them something better> Gene therapy is within our reach – and it needs our continued funding.”

Families like Marie-Joëlle and Alexis’s are the reason we keep pushing forward. Join us in building a future where every child with cystic fibrosis can live without limits.