On the baseball field, Blair is working on getting better. At dance, she’s one of the girls on the competitive team, where she does ballet, tap, jazz, and hip hop. And when she grows up, she says she’s going to be a dance teacher.
Eight-year-old Blair is a lot of things. She also happens to have cystic fibrosis (CF).
Blair arrived about four weeks early, strong and fighting. But as the weeks went on, no matter what her parents tried, she couldn’t gain weight. Weekly visits, a special formula, and a trial of enzymes didn’t help. The sweat test came back negative, because Blair, just a baby, couldn’t produce enough sweat to test. Her mom, Kate, remembers the confusion. Everyone was asking what this could possibly be.
Her care team at Children’s Hospital, LHSC, kept looking. A full genetic panel finally gave the answer, and at two months old, Blair was admitted in hospital for three weeks. With the right enzymes and support, she started to get stronger. Kate remembers seeing the colour rush into Blair’s cheeks within days.
“They never gave up,” says Kate.
“They kept advocating for Blair, even when they didn’t think she had CF. The love we had from them was incredible.”
Blair’s first years were spent in a protective bubble, kept away from germs as much as possible, and as she got older, the infections and antibiotics kept coming. Then, just before her sixth birthday, she started Trikafta, a modulator therapy that targets the underlying cause of CF. Kate describes the change as unbelievable: Blair gained about 12 pounds in six months, her lung function rose by roughly 20 percent, and her sinus symptoms nearly disappeared. For the first time, her family went six months between clinic visits.
Blair’s daily routine hasn’t changed. Treatments still come first thing in the morning and again after school. But Blair’s team gave her family something they didn’t realize they needed: permission to live.
“CF was such a consumption of our life,” Kate says. “It was all we could think about, all we could talk about. It came into every single decision we made.”
Blair’s team encouraged them to go on vacation, and the family has since been to Disneyland, Florida, and Vancouver. Blair’s next dream destination is Japan.
Kate’s hope is simple: that Blair lives a happy, fulfilled life and feels she can do whatever she wants, with CF never holding her back.
“Take the trip, go on vacation, do the things you want to do with your family. You just never know what’s ahead, CF or not."
As a Patient Ambassador, Blair joins other children at Children’s Hospital in sharing her story, so other families facing a diagnosis can see what’s possible.
Ainsley Krienselokker
Marketing Associate
akrienselokker@childhealth.ca
