Our mighty Kaitlyn
When our daughter Kaitlyn was 18 months old, she was diagnosed with BPAN (Beta-Propeller Protein-Associated Neurodegeneration), a very rare genetic neurological disorder that affects fewer than 2,000 people worldwide. BPAN is part of a group of conditions called neurodegeneration with brain iron accumulation (NBIA). It impacts brain development and can affect movement, learning, communication, and independence over time.
Receiving Kaitlyn’s diagnosis changed our lives forever. Like many families facing a rare disorder, we entered a world filled with uncertainty, new medical language, and many questions about the future.
Over the past year, Kaitlyn has worked incredibly hard and has gained so many new skills. Watching her progress has been inspiring. Throughout this journey, the team at BC Children’s Hospital has been by our side every step of the way. The doctors, nurses, and specialists have been phenomenal — not only in their expertise, but in the care, kindness, and support they show families like ours.
BC Children’s Hospital plays a critical role for children with complex and rare conditions. They provide specialized care, support research, and help families navigate incredibly challenging situations. We are deeply grateful for the care Kaitlyn has received.
We're running to give back and to help ensure that other children and families can receive the same incredible support.
If you’re able to donate, thank you for helping make a difference for kids like Kaitlyn.
