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'Maybe I'll Come Up with a Cure' – Nathan Hayes’ Story

Like his parents, Nathan Hayes keeps up with the latest advances in retinal research. He’s even had some skin removed, so that a researcher can create stem cells that may someday restore the vision he’s lost to retinitis pigmentosa. “I figured I’ve learned so much about the science, I might be a researcher myself,” he says. “Maybe I’ll come up with a cure.”

Practically speaking, that would work out nicely. Nathan’s 13 and, because of his vision loss, knows he’ll probably never drive a car. “But he’s OK with that,” his mother, Amy, says. “He told us he’s going to make enough money from curing all these diseases to have a driver.”

Humor, optimism, energy and intelligence—these are among the many traits the Hayes family (which includes sisters Teagan, 12, and Kacy, 10) employs while laying the groundwork for Nathan’s future and supporting the Foundation Fighting Blindness. I recently spoke with Nathan and Amy, who provided valuable insights into living with a retinal disease.

How was Nathan diagnosed?
Amy: We’d been told by the doctor since Nathan was little that he was nightblind. Later, he took an IQ test with a psychologist, who told us he was within the genius range but had a visual-processing disorder. So we took him to a specialist, who diagnosed retinitis pigmentosa. My husband and I were shocked at first, but then we took a step back and said, “There are worse things than losing your vision. Nathan’s not going to die from this.”

Nathan: I was kind of relieved because now I knew why I’d been tripping and bumping into things. I wasn’t just clumsy.

What challenges do you face?
Nathan: My field of vision is 10 to 15 degrees [out of 180]. It’s kind of like taking two empty toilet-paper rolls and putting them on your eyes. And I don’t have any night vision. In dim light, I can see a tiny bit. Anything below dim, I can’t see.

At night, I carry around a flashlight and use my cane. In school, I use an iPad and I have a mobility teacher, who shows me how to use the cane to get around. I’m learning Braille. But I also take karate and play with my friends. I’m lucky to have great friends and family members who support me.

Amy: Here’s a good story. A couple of years ago, on his first day of 6th grade, and of middle school, all the students went outside and brought their lunches, and they all put them on the ground. So there were more than 400 lunches on the ground, and he’s outside playing. And when it came time to go back in, Nathan couldn’t find his lunch. And he stepped on a couple students’ lunches.

This was the first day, and you had kids coming from different elementary schools who didn’t know him. They were like, “Why are you stepping on my lunch?” But his friends, who are a great group of kids, explained. Then everyone helped him, and that was the last of it.

How did you get involved with FFB?
Amy: We needed to be around others who were facing what we were, so we searched the internet and found the Foundation. I immediately reached out to the Chicago chapter. I must have been enthusiastic, because right away they invited me to join the [5K] VisionWalk committee, where I met so many supportive people. I remember going home and telling my husband, “This is the greatest group of people, and this is going to help us get through it.”

We did our first VisionWalk in 2012, and the next year, I became chair of it. Over three walks, our team, Team Focus, has raised about $60,000.

What do you see in Nathan’s future?
Amy: We’ve talked a lot about college and which colleges would be most conducive to being a student with a visual impairment. We also tell Nathan, “You could be cured by college.” We’re that hopeful. We know how groundbreaking FFB’s work is, and that it supports many projects getting closer to clinical trials. Nathan is only 13, so we’re confident if he doesn’t get his vision back completely, they’ll be able to stop the loss.

Nathan: Most people who are blind or visually impaired can get by. It wouldn’t be the end of the world to go blind. I have people who love and support me. But I’m also optimistic that there will be a cure.

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