Editor’s note: September is Albinism Awareness Month. In effort to increase awareness of albinism and subsequent low vision in children, APH FamilyConnect shares a dad’s story of learning his young son has albinism.
Benjamin was born in November 2017. He was fair-skinned and blonde and looked exactly like we thought he would. Both of his parents were blonde as kids so we thought nothing of it, and we took home our precious baby boy. Fast forward six weeks—Benjamin got sick and ended up spending several days in the hospital.
During the hospital stay his eyes started shaking back and forth. The doctors at our small-town hospital thought this was seizure-like activity and transferred us to a larger hospital for further testing. After an EEG and MRI found nothing, the neurologist just said that they didn’t find anything definitive, and to just wait and see if it stops. They signed off our case and we were discharged from the hospital the next day.
At his two-month well-child visit, which was only about a week after the hospitalization, his eyes were still doing it, but not constantly, so we were once again told to just wait and see. By his four-month appointment, we said we were done taking the wait-and-see approach, and his doctor referred us to an ophthalmologist.
The ophthalmologist examined him and then left the room for what felt like an eternity. When he finally returned, he sat down and asked us if we had ever heard of albinism. Now of course, in animals, absolutely we had, but in people, no. So, we officially had our diagnosis at 4 months old but had no idea what it meant or what to do next.
This ophthalmologist referred us to a pediatric ophthalmologist several hours away. We didn’t have to wait long to get in, but by the time our appointment came around, we had done a Google search on albinism and were a little overwhelmed and scared for our son. The pediatric ophthalmologist confirmed the albinism diagnosis, but he did so much more than that. He helped guide us on what steps we should be taking next: he told us about First Steps (Early Intervention),about VIPS (Visually Impaired Preschool Services Indiana), and about the importance of finding a dermatologist, but more so, he was able to ease our minds a bit.
We were referred to a geneticist, who gave us the official diagnosis of OCA 2. While it took some time to get set up, we did end up receiving services with First Steps and VIPS that continued until Benjamin’s 3rd birthday. Through First Steps and VIPS we have met some wonderful people and learned so much. Upon transition out of First Steps and VIPS, Benjamin was evaluated to see if he qualified for services through the public school system. They came to his preschool, evaluated him, and denied him. We were completely in shock, and honestly, I cried. I thought that it meant he would get lost in the shuffle of the public school system and left to fend for himself. That is not what Benjamin deserves.
Advocating for School Services
Benjamin started his second year of preschool and was obviously struggling with tracing letters, tracing lines, and cutting. We requested another evaluation. This time they approved, and once again I cried. Not tears of sadness this time, tears of happiness, and relief. The school system put in place an IEP for Benjamin that I truly feel has Benjamin’s best interests at heart. I know how hard it can be to get an IEP and feel truly grateful that Benjamin has one. They are just starting to explore some adaptive techniques that I hope will be able to get Benjamin back on track with his peers.
Benjamin is such a strong-willed four-year-old who doesn’t let his diagnosis define him. He is not afraid of a challenge, and I look for him to do great things in life.