My journey with ONH

My journey with ONH. What is ONH?

By Samantha Sinclair

My name is Samantha, and I am legally blind. At age three months I was diagnosed with Optic Nerve Hypoplasia or ONH. It was noticed by my family that my eyes were not functioning as they should. At first, doctors thought I had tumors behind my eyes, but thank God, that was not the case.

According to Web MD, this condition occurs to a development in utero. The Optic nerve is the nerve that allows you to see by sending light signals to the brain. Problems caused by ONH can range from mild visual impairment, blindness, an uncontrollable shaking of the eyes called Nystagmus, and Strabismus which is a misalignment of the eyes. According to Web MD 90 percent of those diagnosed also have central nervous system abnormalities, and 70 percent live with neurodevelopment handicaps. According to Rarediseases.org other serious health issues that if left untreated could be life threatening. Some children with ONH have high intelligence while others struggle with learning delays.

It was told to my family in the early days that face deformities, kidney issues, seizures, or other health issues could be present. I have been blessed they have not. I attended public school, though it wasn’t always made a pleasant experience for my family and I. Other times, we had complete support. There were several involved in the school system at the time who thought I should be sent away to Kentucky School For The Blind in Louisville. I was three at the time. My parents would have had to dropped me off on Sunday and picked me up on Friday. I’m so thankful they did not. KSB is wonderful but that isn’t for everyone. Also, we deserve the same opportunities. While I needed some extra assistance and extended time on some assignments, I was in the classroom.

In closing I would like to say thank you to those who have supported me, and the visually impaired as a whole. To those who believed at the time I should have been in a special school, I hope your views have changed. We have made progress in not only accessibility in the last thirty years, but I hope society is educating their mind set on disability.