Dr. April Price on how a new transition program is helping young people with CF prepare for adulthood
When Blair was just a few weeks old, her parents knew something wasn’t right.
Despite everyone’s best efforts, she wasn’t gaining weight. Hospital visits became routine. Tests brought more questions than answers. Even after an initial sweat test came back negative, something told her care team to keep searching.
Eventually, the answer came: Blair had cystic fibrosis (CF).
“It was all we could think about,” her mom, Kate, recalls when thinking back to the diagnosis. “Every single decision felt scary.”
Those first years were filled with hospital stays, medications, and learning how to navigate life with a chronic illness. Blair’s care team at Children’s Hospital, LHSC became an extension of her family.
“The love and support we received from Dr. April Price and the entire team was unbelievable."
Over the past several years, care for children with CF has changed dramatically.
In recent years, highly effective modulator therapies, such as Trikafta, have transformed care for children living with cystic fibrosis. For those who are eligible and respond well to these medications, they can slow disease progression, reduce hospitalizations, and improve quality of life.
For Dr. Price, Blair’s story represents something remarkable happening in cystic fibrosis care.
Advances in treatment have helped many children with CF stay healthier and spend less time in the hospital. While CF remains a lifelong disease requiring daily treatments and specialized care — and not every person with CF is eligible for benefits from newer therapies — these advances have transformed care for many families. As a result, many children living with CF are now living longer than ever before.
That success has created a new challenge.
More young people with CF are reaching adulthood, bringing new questions about how to manage their health independently, navigate the adult healthcare system, and prepare for the future.
“As they become adolescents, we want to ensure they know how to manage their disease independently,” explains Dr. Price.
“Our goal is for them to transition to the adult clinic more empowered, more independent, and more prepared to advocate for their own health.”
With support from Blair’s grandparents, Children’s Hospital is developing a new cystic fibrosis transition program to help make that possible.
The program will provide young people with personalized education as they prepare for adulthood, covering topics such as managing medications, understanding their condition, mental wellness, future health concerns, family planning, and building the confidence to take ownership of their care. Parents will also receive guidance as they learn to gradually hand over responsibility and support their children in becoming their own advocate.
For families like Blair’s, that support will make all the difference.
These days, you’ll find Blair on the baseball field, at dance competitions or dreaming about her future career as a dance teacher. She loves travelling with her family and is excited about all the adventures still to come. With advances in CF care, Blair has gained weight, her lung function has improved dramatically, and the constant cycle of infections has finally slowed. While she still lives with CF and continues daily treatment, she now has more opportunities to focus on simply being a child.
Blair’s future looks different than her parents once imagined — not because CF has disappeared, but because she has a dedicated team helping her prepare for every stage of life.
Wanting to ensure other young people with CF have that same opportunity, Blair’s grandparents made a generous gift to support the new cystic fibrosis transition program.
His generosity will help equip adolescents with the knowledge, confidence and support they need as they move from paediatric to adult care — giving them the tools to become informed, independent advocates for their own health.
“Children’s Hospital gave us permission to let her be Blair. Not just a child with cystic fibrosis.”
Thanks to the generosity of donors like Blair’s grandparents, more young people living with cystic fibrosis will be empowered to navigate adulthood with confidence — ready to ask questions, make informed decisions and embrace whatever the future holds.
Ainsley Krienselokker
akrienselokker@childhealth.ca
