This open letter is my response to an article written by Lee Kofman and published on Mamamia.com.
Dear Dr. Kofman,
I was pleasantly surprised to come across your recent post about parenting your son who has albinism. In my opinion, there aren’t enough people like you sharing these stories which help to enlighten the community. Allow me to introduce myself. My name is Mack, I am 20 years old, and live in North Carolina, United States. I was born with another form of albinism, ocular albinism. This genetic variant affects my vision in many similar ways as your son Ollie’s. I have a nystagmus that people usually cannot help but notice, lack sufficient melanin in the iris and retina parts of my eyes, and have trouble reading classroom boards, restaurant menus, books… you name it.
Your son Ollie, sounds precious and gifted, playing piano at such a young age! I applaud your continual effort to locate all the resources available to you to help your son grow up with everything he could need. I too have been through that cycle of conferences, appointments, and specialists. I have heard my fair share about stigma surrounding physically apparent conditions like albinism. One thing that I think has helped so many people with low vision to reach their potential is to come into contact with the right advocacy group that changes the individuals life forever. And while I do not want to provide anyone with false hope, I would be remiss not to share with you my story and how I found the thing that can help me reach my potential.
When I was an infant, my parents learned I had ocular albinism, and from that point on, 20 years ago, my parents lived with the fear of me not being able to drive. For 14 years it had never crossed my mind I could be even more different than I had realized, never pondering my ability to obtain a driver’s license. My parents, holding out for some miracle, kept in touch with my low vision specialist in between appointments about any new breakthroughs in the field that would enable low vision patients to drive. They learned about Ocutech and I soon got one of their products which allowed me to drive! I then was able to drive myself to school, athletics practice, and to friends’ houses. This was something my parents never expected me to be able to do myself.
I now attend University of North Carolina at Chapel Hill. I am a third year studying economics and entrepreneurship, still using my bioptic device to drive everywhere! I also now work as an intern for Ocutech, the very same company who gave me so much independence. My job there is to share my story, and how their product changed my life forever. Eager to make an impact, I have searched for people who could benefit from my story. Upon reading this heartfelt post of your experience so far with Ollie, I could not help but reach out.
If you are interested in seeing what could be out there for Ollie, I would love to answer any questions you might have and be a resource for you to make sure you leave no stone unturned. Please reach out to me at my personal email firstname.lastname@example.org, I would love to get to know you and your family!
Eager to hear from you soon!
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