Emma Fontaine competes in Ironman Canada-Ottawa as new CF medication transforms her future

Emma Fontaine spent her childhood unsure if she would live past 40. With cystic fibrosis diagnosed at two months old, she watched the disease deteriorate her lungs and pancreas while limiting her life in ways most people never consider — even avoiding friendships with others who had CF because the bacterial exchange between patients could worsen their conditions.

But a new medication called Trikafta, approved in Canada in 2021, has transformed her outlook. "Before taking it, I was in and out of the hospital. Since I've been taking this medication, I haven't been hospitalized once," said the 24-year-old from Montreal, who has been on the drug since 2022.

Cystic fibrosis causes mucus to build up in the lungs, pancreas and other organs. As of 2024, about 4,400 Canadians are living with the disease. More than half of Canadians who died from it in 2022 were younger than 40.

With Trikafta, Fontaine can now plan a future confidently — she is studying mining engineering at the University of British Columbia. But medication alone hasn't driven her transformation. She discovered that running and physical activity functioned as another kind of treatment, gradually lifting her lung capacity from between 65 and 70 per cent before she started running to between 85 and 90 per cent after sustained training.

Now, after growing up hiding her condition at school, wearing feeding tubes and giving herself insulin shots at lunch tables, Fontaine is stepping into public visibility as an athlete and CF advocate. She was set to compete in the Ironman Canada-Ottawa marathon on Sunday, participating in what she calls an extension of her healing.

For most of her childhood, Fontaine tried to keep her CF invisible. "I didn't want anyone to pity me, but, on the other hand, I was often out of school because I was hospitalized, or I had episodes where I had a feeding tube. So, eventually, people knew. But I didn't want it to define me at all, so I would never talk about it," she said. At 11 or 12, wearing a feeding tube to school for the first time felt like a breaking point. At 15, a CF-related diabetes diagnosis meant routine insulin injections at the lunch table.

She grew up without a community of young people with CF who understood the isolation the disease creates. "No two people with CF can be within six feet of each other. It isn't contagious, except for other people with it, because you might have bacteria that other patients don't have. I didn't have anyone to look up to," she said.