Meet Adam

Adam is a joyful little boy with a big heart and an even bigger family. He loves listening to his favorite band, Grupo Frontera — music is his world, and he often sings along in his own special way. When he’s not vibing to his favorite tunes, Adam enjoys swimming, eating ice cream, spending time at his PPEC, and playing with his siblings and parents. Despite being surrounded by the usual noise of a large family, Adam remains mellow and content, rarely ever complaining.

Recently, Adam celebrated a major milestone: graduating preschool at Bodwell Academy! This accomplishment is even more meaningful considering the journey he’s been on.

Adam was born with a rare genetic condition called BBSOAS (Bosch-Boonstra-Schaaf optic atrophy syndrome), which was discovered after he experienced his first and only seizure at 9 months old. After months of searching, they finally had a name for his condition. BBSOAS is caused by mutations in the NR2F1 gene, affecting brain development, growth, and muscle tone. For Adam, this means low muscle tone, global developmental delays, and challenges with mobility and communication. He’s not yet able to stand like other kids his age, and he hasn’t started talking, but he communicates in his own way, especially through music.

Every small victory — like sitting up, rolling over, or feeding himself — has been the result of intense and ongoing physical, occupational, feeding, and speech therapy. It hasn’t been easy, but Adam’s spirit and determination have carried him forward every step of the way.

BBSOAS is a lifelong condition, but it’s not fatal. With love, therapy, and the incredible support, Adam continues to thrive in his own unique way.