Meet Harper: a story of resilience and hope

Discover the incredible journey of Harper, an extraordinary 8-year-old from Dartmouth, Nova Scotia, living with CTNNB1 Syndrome. Her determination and vibrant spirit shine through every challenge.

Harper's journey: finding the answers

Harper's journey began with a diagnosis of cerebral palsy at 20 months, but her parents knew there was more to her challenges. After three more years of searching, they received the official diagnosis of CTNNB1 Syndrome. This genetic condition impacts her mobility, communication, and learning. Harper relies on a wheelchair for distances and can only bear weight with AFO braces and a walker. Despite these hurdles, her spirit remains unbroken.

A bright spirit with unique joys

Harper is a sensitive and sweet child with a profound ability to read emotions and non-verbal cues. She loves animals, flowers, and being outdoors, finding immense joy in simple pleasures. Even though she bounces on her hands and knees, the trampoline is a favourite. She finds great happiness playing with dolls, showing immense nurturing care. Harper yearns to connect with other children and wants nothing more than to play alongside them.

Unlocking Harper's potential

Harper possesses incredible potential, a determined and strong spirit, and is every bit as amazing as her peers. While she faces significant challenges in reading and basic numeracy as she approaches her 9th birthday in September 2026, her ability to understand emotions is truly remarkable. The gene replacement therapy offers Harper her best chance at fully contributing to this world, allowing her to thrive and reach her full potential.

"Harper's spirit and determination are truly inspiring. She has so much potential, and this therapy is her chance to shine."