Boy Wonder

Affected by Stargardt disease, 12-year-old Louie McGee describes his life with low vision and how he and his family rally friends, classmates and neighbors to participate in Foundation fundraisers.

My name is Louis McGee, but everybody calls me Louie. I’m 12 years old, I’m in 6th grade and I live in St. Paul, Minnesota. I have an eye condition called Stargardt disease. I can’t see with my central vision, so I have to use my peripheral. At school, I need things digitally magnified, so that I can read.

I was 5 when I was diagnosed. We went for my regular eye check-up, and the doctor saw something in the back of my eye she thought we should look into. So then we went to another doctor who knew more about it, and they diagnosed Stargardt disease.

My vision wasn’t too much of a problem then, but it sort of got worse really fast. Then it stopped. So my vision’s been the same for about four years now. I’m used to it, but I have to go to a special doctor every year in Iowa. His name is Dr. Ed Stone and he’s doing research on cures for my disease and ones similar to it.

I play soccer, I’m on the track team, I swim and I just started golfing. I play the piano, and I like to make duct-tape art. I made a gigantic ‘L,’ for ‘Louie.’ I also made a gigantic toothbrush and a pencil that’s three feet long. All out of duct tape.

My friends and classmates know I have Stargardt disease. My parents, Greg and Annie, come in every year and tell the class about my disease, to refresh their memories. We recently made glasses that simulate how I see. We put a couple of layers of tape in the middle of each lens, then just a little bit around it, so that it’s blurry around the edges. I also helped make a video, to show what it’s like doing something as simple as trying to get around the mall.

We got involved with the Foundation after hearing about the first VisionWalk here in St. Paul. We saw on the website that you could have a team. So we made a team and, at the walk, learned more about the Foundation. Now I’m the youth chair of our VisionWalk. We’ve been doing it for six years.

Every year my family holds a special fundraiser to help raise money for the walk. This year’s was Dining in the Dark, at my school. In the spring my parents went to a Dining in the Dark for adults, and I asked them, “Why don’t they have one for kids?” So we decided to do one. It was in our school cafeteria. A little less than 300 students showed up.

I think they know now that it’s a lot harder to do things when you can’t see well. We made a poster that’s like a menu board, and kids tried to read it with the glasses we’d made. We also had an obstacle course, where they used a cane and had a blindfold on.

It’s important to me to help my classmates understand vision loss while people like Dr. Stone are working to find cures.