Sharing my vision.

When graduating high school student Jack McCormick realized that his Leber congenital amaurosis (LCA due to mutations in the RPE65 gene) could be an obstacle to success, he was devastated. That’s when he got busy.

 
University business student, Jack McCormick, lives with Leber congenital amaurosis (LCA due to mutations in the RPE65 gene).

University business student, Jack McCormick, lives with Leber congenital amaurosis (LCA due to mutations in the RPE65 gene).

When I was born, it didn’t take my parents long to realize that I was different from most other children. I didn’t look at people, and instead, tended to look at lights. What they did not know at the time, however, was that I had a form of Leber congenital amaurosis (LCA). LCA is a group of rare inherited retinal diseases (IRDs) that typically impairs one’s sight from birth, progresses in the late teens, and results in blindness. 

My parents eventually suspected that I might have vision problems and took me to the ophthalmologist. He quickly brushed them off, referring them to a neurologist with the belief that I had an intellectual disability, rather than a visual impairment. The neurologist quickly realized that the cause of my problems was not an intellectual impairment, and promptly referred them back to the ophthalmologist. Finally, after we went back and forth between the two doctors, the ophthalmologist decided to run an electroretinogram (ERG). I was diagnosed with cone-rod dystrophy—not the IRD I actually have. My parents were told that I couldn’t see as well as everyone else, but that my vision should stay stable. He gave them resources to help them successfully raise a partially sighted child, and encouraged them to challenge me so that I could develop as much as my sighted peers.

 

“I decided that I could either let the diagnosis impact me negatively or let it motivate me to work harder.”

It was this last piece of advice that shaped me more than anything else in my life. For the most part, I grew up like other children; I played sports, went to school, and made memories with my family. I also experienced my fair share of challenges—struggling to ride my tricycle behind my parents during evening walks (before they realized that I couldn’t see in the dark), experiencing limited academic accessibility, and being bullied because I was different. 

In 10th grade, my vision started to change. I remember sitting in class and all of a sudden noticing this light that I couldn’t stop seeing, no matter how many times I blinked. I remember thinking, “Were the doctors wrong? They had always said that my vision would be stable.” It turned out that, yes, they were wrong. 

After over a year, countless tests, and finally, genetic testing, I was diagnosed with LCA (due to mutations in the RPE65 gene). That meant I was losing my vision. Luckily the news came during the best summer of my life, making the diagnosis easier to accept. I’d just landed my first summer job and was attending an international business conference for high school students. During that summer, I decided that I could either let the diagnosis impact me negatively or let it motivate me to work harder. I chose to let it motivate me, and decided that I needed to change a few things in my life if I still wanted to achieve my definition of success; so, I applied for a guide dog and began to learn braille. Little did I know that my optimism would soon fade.

Jack and his guide dog, Jake.

Jack and his guide dog, Jake.

In 2014, when I was in 12th grade, I realized just how difficult my life might become for me. The excitement of being accepted into my dream university, graduating from high school, and getting my guide dog in July was overshadowed by the realization that the world is not necessarily accepting of or accessible for people with vision loss. 

I first realized this when I applied for a summer job, for which I was more than qualified. I experienced blatant discrimination during the hiring process. The ordeal prompted me to look up statistics on the socioeconomic status generally obtained by people with vision loss. The facts were disheartening, and hope in my future dwindled. I felt like society’s perception of my vision loss, and its corresponding perception of my ability, were creating too many barriers and might prevent me from reaching my goals. 

Those were the hardest eight months of my life. Most of the time, the only thing that kept me going was my excitement to be receiving my guide dog and the thought of starting university. I finally decided that if society’s perception of my vision loss was going to prevent me from reaching my goals, then I would just have to work to change that perception. I had no idea, however, how to do it.

Luckily, I didn’t have to have all the answers. Soon after starting university, I was approached by another first-year student who wanted to found a campus club related to blindness. Her best friend growing up was blind and she recognized the challenges that her friend had to endure as a result of society’s perception of blindness. She wanted to make a difference in our university’s community. From our passion, “Eye to Eye” was born—a student club with a simple goal: to eliminate stigmas associated with visual impairments. We have gained a large membership and hosted several engaging events aimed at raising awareness, including: dinners in the dark, a speaker series, and advocacy booths. This is just the first of my initiatives to change society’s perception of blindness. I know it won’t be my last.

Share this story!


Disclaimer: The opinions and references found in this patient story belong to the author alone, and do not necessarily reflect the opinions of aSharedVision.com or Spark Therapeutics. Spark Therapeutics is not responsible for the accuracy of any of the information supplied by third-party sites referenced in this story.