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In this episode, Breathless explores what it means to grow up with cystic fibrosis, reflecting on how that experience has evolved over time. Jeremie looks back on his early childhood, including the moment his parents first learned about his diagnosis, when scientific breakthroughs felt distant and uncertain, even as progress was beginning to take shape.
That shift becomes clearer as the episode brings together two families living with cystic fibrosis across different generations.
The Drakes Story
This episode’s first guest, Ross Drake, is the father of three boys, Michael, Steven, and Ryan, who lives with CF. When Ryan was younger, his symptoms were initially thought to be asthma, something his older brother Steven had already been managing. As a result, the family followed a familiar approach. However, Ryan continued to get sick, and it became clear that something more was going on.
Ross recalls the series of tests and repeated visits to doctors as they searched for answers. One of those tests was the sweat test, which measures the level of chloride, or salt, in the sweat. The CFTR protein plays a key role in regulating how chloride moves in and out of cells. When this function is disrupted, chloride remains on the surface of the skin, leading to higher concentrations. A result above a certain threshold confirms a diagnosis of cystic fibrosis.
However, for Ryan, the test results were below the threshold. As a result, further testing was required, including an evaluation of the mucus. Ryan was nine years old when he was finally diagnosed with cystic fibrosis. After Ryan’s diagnosis, doctors recommended that his brothers be tested as well. Shortly after, Steven, who had previously been treated for asthma, was also diagnosed with CF.
In the early 2000s, when the Drake family received this news, the median life expectancy for someone living with CF was around 37 years. Ross reflects on what he knew about the condition at the time. He understood that it affected the lungs and that it was serious, but he had little sense of what care and day to day management would actually look like.
Jeremie asks Ross what he would say to a parent hearing those words for the first time: “Your child has cystic fibrosis.” Ross responds that the first thing he would say is, “I am sorry that you are going through this,” because in that moment, the diagnosis carries a sense of grief.
Before breakthrough treatments, the logic of care focused on physiotherapy, enzymes, and frequent clinic visits, all aimed at slowing the progression of the disease. As Jeremie describes it, parenting with CF meant building daily life around prevention. Over time, Ross became involved in fundraising, connected with other CF families, and eventually served as a board member of Cystic Fibrosis Canada.
He reflects that while the journey began with fear, it also led to a sense of connection and shared purpose. There were many others facing the same challenges, and that sense of community brought hope.
Different Decade
Brittany Hollowink, a mother to her son Miles who lives with CF, shares a different experience, shaped by a later era. When Miles was just weeks old, she recalls episodes where he would stop breathing and then recover. This led to frequent hospital visits and testing. At one point, she was told it was a Brief Resolved Unexplained Event; something often summarized as babies doing unusual things.
However, Brittany share Miles began showing signs of discomfort after feeding. A few days after one hospital visit, she received a call recommending that Miles undergo newborn screening, a test that had not been available in the same way when Ross’s children were growing up.
A Shift in Outcomes
Throughout the episode, it’s apparent Trikafta has been a major factor in changing the outlook following a CF diagnosis. Ross witnessed this change firsthand through his son, Steven. He notes that Steven qualified for the treatment due to lung function levels, which now has led to noticeable improvements.
For Brittany’s family, Trikafta was part of the reality Miles was born into. Jeremie reflects that Miles began treatment early enough that he may never experience the full effects of untreated CF. This is a statement that would not have been possible when the Drake family received their diagnoses.
Hope is only a part of the resolution
Parents living in this new era understand that hope is only part of the “resolution”. Brittany notes that there are still risks, including infections that children can develop over time. Trikafta is not a cure. Miles still carries the genetic mutation, and it will remain part of his life. While the treatments exist, they do not remove the condition entirely.
Experiences such as building a stronger immune system or attending school can feel both ordinary and significant. They exist within a reality shaped by decades of research, fundraising, clinical trials, and the efforts of families like the Drakes, who did what they could with the tools available at the time.
Jeremie closes the episode by framing this moment as one chapter in a longer story. While progress has been made, he emphasizes the importance of continuing forward until treatments are available for everyone living with this disease.
