Brighter Because of Beau

Program: KIF1A

Beau’s Story:

Beau is a resilient, goofy, and rowdy little boy—lovingly nicknamed the “Beau-nado” because he’s always on the move. He has a deep love for music and finds joy in anything involving climbing, cars, or splashing in water. Whether he’s singing along to the radio or tapping along during music therapy, his laughter is truly contagious. Though he does not walk independently, Beau explores the world around him with fierce determination—crawling, using a walker, or riding in his wheelchair—always eager to learn and discover.

Beau’s Diagnosis Story
After years of infertility and miscarriages, Beau was born healthy with no signs of disease. As a “COVID baby,” he spent much of his early life at home, with limited time in daycare. Over time, his parents began noticing developmental delays—late crawling, poor balance, and difficulty responding to his name. At 15 months, Beau began physical therapy, and the full extent of his delays came into focus. Doctors initially considered diagnoses like autism or cerebral palsy, but genetic testing revealed something far rarer. On December 17, 2021, Beau was diagnosed with KIF1A-associated neurological disorder (KAND)—a progressive, currently incurable neurodegenerative disease. At the time, Beau was one of only a few hundred people worldwide known to have KAND. His family leaned on the KIF1A.org community for support and remain steadfast in their advocacy for treatment and research.

Life for Beau
Beau’s daily life is filled with therapies, adaptive equipment, and support services designed to help him stay strong and engaged. He uses AFO braces, a walker, wheelchair, and other medical tools to move through his day safely. At school, Beau receives occupational, speech, physical, and visual therapy with the help of a 1:1 aide. Outside of school, he works hard through music, swim, horse, and neuro-based therapies. While navigating challenges like epilepsy and frequent injuries, Beau continues to explore his world with wonder and excitement. His days may require extra gear and planning, but with the love of his family and the right support, he’s facing each step with courage and curiosity.