Louie McGee. The name sounds fictional, as if it belongs to a protagonist in a children’s book who, after overcoming insurmountable odds, inspires others. But Louie is real, and, due to Stargardt disease, he’s legally blind. The St. Paul, Minnesota, 7th grader also plays soccer, runs track and swims. And he’s a superstar FFB fundraiser who’s youth-chaired VisionWalks and hosted Dining in the Darks — blindness awareness events, during which kids eat meals blindfolded — at his school, most recently last month.
Louie was also one of just 10 teenage volunteers nationwide given a 2013 Prudential Spirit of Community Award, and is now featured in the pages of TIME for Kids.
But the best way to get to know Louie is to let him speak for himself. What follows is a speech he delivered to fellow classmates, one that piggybacks on the theme of a video he co-produced two years ago:
My name is Louie McGee. I am 13 years old, and my doctor tells me I am blind. Not the kind of blind you think about when you hear the word “blind,” but legally blind, which isn’t as simple as black or light. I have Stargardt, a rare disease of the retina that takes away my central vision. That’s the strange part – losing part of your vision.
When I was 5, and found out I had this disease, my parents seemed worried and everyone stayed away from the word “blind.” I always figured “blind” meant all I could see was black, but that wasn’t me. In fact, nothing actually changed that much for me. I have this disease and it doesn’t hurt, and I can still see some stuff.
After my first visit to the eye doctor, my mom and dad found the Foundation Fighting Blindness, which is completely focused on developing a cure for blindness. I thought it was crazy that nobody had figured out any real treatments or cures already. I was also a little surprised that there was a group of people raising money and giving it to researchers trying to figure this all out.
I have been lucky enough to be asked to be Youth Chair for the Foundation’s Twin Cities VisionWalk three years in a row. Last year, I also hatched an idea we call “Dining in the Dark for Kids.” The dinner takes place at my school and raises money and awareness for vision diseases like mine. Last year, we had more than 300 kids come – along with practically every news crew in town.
It was a blast. I got to choose the dinner – spaghetti and Jell-O. The kids were handed blindfolds, then served the mystery dinner. It was a huge mess and a ton of fun! And with the games we had upstairs – including navigating an obstacle course with a blindfold and a cane – I think they learned a lot about what it means to be blind, black and light.
All this stuff for the Foundation Fighting Blindness has not only been fun – we are actually trying to cure this. It seems like each month over the past year I have heard about a clinical trial that is saving or restoring vision for one of the many diseases those of us with some level of blindness face. And I feel like I’m a part of it.
My friends at the Foundation even nominated me for a national community spirit award for volunteerism. There were 28,000 people nominated, and 100 were chosen to go to Washington, D.C., and then the top 10 youth volunteers in the nation were selected. I couldn’t believe I was one of those chosen.
My mom and dad went with me to Washington. I met kids from every state and heard about all of the stuff they were doing to help people in their own communities. It was inspiring.
As I look ahead, I am full of hope. Hope for the future – near and far. I love playing soccer, skiing, running track and being on the swim team, and will continue with those sports. I have a lot of great friends and mentors. I can only imagine a bright future.
I am certain that we will find a cure for this disease – me and my friends at the Foundation Fighting Blindness. Even if we don’t, and I continue to lose more of my vision, I know I will continue to have the opportunity to do more great things. After all, it’s not as simple as black or light – and doing great things isn’t ever simple.