Having been "in business" since 1991, Vision of Children has come to know many of the kids we are trying to help and whose families we have provided support to over the years. Nathan Deese has not only survived, but he has thrived, despite being legally blind. The first part of this blog is from Nathan's Mom, Stacy Fisher, and then an awesome letter from Nathan himself!
diagnosed with ocular albinism with nystagmus when he was 3-months-old. My older
brother and two of my nephews are also affected. He has been treated by Dr.
Zane Pollard in Atlanta since that time. Dr. Pollard did an eye muscle surgery
on Nathan when he was 2-years-old, and at 3-years-old he began wearing
glasses. We have been blessed to have wonderful people in our public school
system that have worked with Nathan to meet his classroom needs. He has exceeded academically since Pre-K and we're about to send him off to college.
The work that Vision of Children (VOC) is
doing is so important to our family! We greatly appreciate the efforts that are
going into researching OA (and many other vision disorders) which will
hopefully lead to a cure or treatment one day. It is a rare disorder, so creating awareness is key & we feel that VOC is doing just that! Because of the work they are doing we also have hope that there will one day be a cure for OA. We look forward to the newsletter and enjoy reading posts that inform us of the progress being made
through research, and the stories that others share are inspiring.
Dear Vision of Children,
My name is Nathan Deese and I am a recent honor graduate of Douglas County High School in Douglasville, Georgia. I also participated in the International Baccalaureate Program (IB), which is the most rigorous academic program offered in the world. In the fall of 2013, I will attend Georgia Tech and plan to major in Aerospace Engineering and minor in Spanish. I have accomplished all of this, and plan to accomplish more, while having ocular albinism with nystagmus.
Having OA with nystagmus has indeed hindered me in some instances; I have to sit in the front of the class to be close to the board, and I am unable to play some sports, but I have learned to compensate for these situations in various ways. I use a monocular telescope in class that helps me see the board. At first I was extremely hesitant to use it and stand out, but I have surrounded myself with a supportive group of friends who do not view me any differently. Having such an amazing group of friends has made the past four years of high school so much easier. Since I cannot play sports such as baseball or football, I have become an avid runner. I also cannot drive, but again, my friends and family are always more than willing to get me where I need to be.
My advice to anyone would be to take everything in stride and keep a positive attitude. It is extremely easy to become discouraged when you cannot see something far away that everyone else can, but if you look (well, probably squint) at the larger picture, it’s really not a big deal. A sense of humor is also important. My friends and I are always making jokes about my vision! We are able to see the humor in my vision and make jokes that are all in good fun. Lastly, the biggest piece of advice I can give is to always speak up for yourself. If you are unable to see something, don’t sit there and suffer - do something about it! There are many resources available to help. Always keep an open line of communication between yourself and teachers, as well as parents. The most important thing to realize is that being diagnosed with OA is not the end of the world. Always have a positive attitude and focus on your strengths rather than your weaknesses.