In his Beyond Blindness preschool classroom, 16-month-old Theo recently reached a new milestone: learning to push a button on a new toy. His mother, Tammy, treasures each of these moments, no matter how small they may seem.
Diagnosed at birth with oculocutaneous albinism type-1 (OCA1), one of the more extreme forms where his eyes and skin have no pigment, Theo’s first several months of life were filled with uncertainty. Not knowing much about his condition, Tammy spent her days and nights worrying about how his sensitive eyes and skin need to be protected from the bright California sun. But often, her thoughts drifted to the future.
What would life look like for Theo, whose condition already seemed to delay his development? He couldn’t walk, rarely made eye contact, struggled to see and showed no interest in any toys. Though Tammy tried her hardest not to compare, she was filled with sadness every time she watched Theo’s cousin, who is two months younger, hit all his developmental milestones with ease.
But just as the depression and fear were reaching a peak for Tammy, she found hope in a referral to Beyond Blindness from their ophthalmologist, Dr. Rahul Bhola, Section Chair of Ophthalmology and Division Chief of Pediatric Ophthalmology at Children’s Hospital of Orange County (CHOC). A Beyond Blindness board member, Dr. Bhola has seen firsthand the impact our programs have for both children and their families.
Once enrolled in the Early Intervention program, in addition to occupational and physical therapy sessions, Theo began to improve. In his Beyond Blindness infant class, the family celebrates each small victory, whether it’s playing with toys or developing new social skills. Once scared to be with anyone other than his mom and dad, Theo has started overcoming his separation anxiety and will now even interact with his cousin.
At Beyond Blindness, Tammy also found a community of support in other families who have rallied around her as they navigate Theo’s condition. Our enrichment events have helped Tammy and the entire extended family better understand Theo and his unique needs — allowing them to begin creating a “new normal” as they reshape their expectations and mindset to ensure he continues to thrive.
