My Sister Story

By: Emily Singer

My sisters turned twenty-one years old this year on December 3rd - They’re fraternal twins. Sometimes people forget this, as Sophie has ONH or Optic Nerve Hypoplasia. By definition, ONH is the under-development or absence of the optic nerve combined with possible brain and endocrine abnormalities. When Sophie and Rylee were born in 1999, we felt lucky because they weren’t pre-mature and didn’t have to spend anytime in the NICU as twins often do. They were around four pounds and the cutest things my three year old eyes had ever seen. I was enamored and called them my babies. I couldn’t wait to be their big sister. 

Though my moms pregnancy and birth had gone well, the girls caught respiratory viruses and had to stay in the hospital for several days. At one point, my parents were debilitatingly worried that Sophie wouldn’t make it through the night. Fortunately, the girls recovered beautifully and we brought them home. After a few months, we realized that Rylee was doing simple tasks that Sophie was not. My mom suspected she might be blind, as she wasn’t responding to her name or making eye contact. The doctor broke it to my parents that Sophie may never be “normal”. She may never be able to walk, talk, or do the simple things that Rylee had already begun to accomplish. We were devastated but determined. 

My parents contacted every type of therapist and to this day, Sophie is the hardest working person I’ve ever met. Everything that came easily and naturally to myself and Rylee was something that Sophie had to work at. With the help of professionals and commitment of our family, Sophie is not just ‘normal’…She is extraordinary. She can name all of the bones in the body and the capitals of every state. She recently learned how to play Rumikub and beats us constantly. She knits and sells beautiful blankets and makes the most amazing homemade granola you’ve ever tasted. She constantly wows us and everyone around her. She has the best sense of humor. Rylee and I are so proud to be her sister.