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

Nathan HayesLike 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.

Nathan with his familyWhat 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.

Pictured, top: Nathan Hayes during a recent trip to Washington, D.C.; above, Nathan with his family.


11 Responses to '‘Maybe I’ll Come Up with a Cure’ – Nathan Hayes’ Story'

  1. kay lewis says:

    Hi, I loved the article, and I wish the best for Nathan, and his family. I too have RP, and I’m 58, female, and live in north Ga., next to Chattanooga, Tn. I hope Nathan is taking vitamin A, I hear it helps.

  2. Linda says:

    I have RP and it is a scary disease. .I hope they will find a cure one day.

  3. Mariann Campbell says:

    I have 2 young boys with rp…one was 2 when he was diagnosed and my other son was 6 when diagnosed…they are now 9 and 14. Each year that goes by their vision deteriorates and it is truly heart wrenching to hear them say “I can’t see” especially at night. I do have hope for a cure and I will NEVER give up on them!

  4. Jennifer Lueck says:

    awesome story! What an inspiration! I also live with someone that amazes and inspires me everyday…my husband has Stargardts and started losing his vision when he was 9years old. We have two children and he is a he high teacher. I would love more information on the vision walks!

  5. Nazmul says:

    What an inspiration!nice post.

  6. Rene Latorre says:

    What a great story! I love Nathan’s positive attitude. His parents and he are right that blindness is not the worst thing that could happen and he needs to know that there is no limits on what he can do. I am a mom of four children, an advocate working for a blindness organization, and I happen to have RP. I too think we will have a cure in our lifetime, but I think it’s more important that Nathan knows that he will be just fine with or without vision and the sky really is the limit to what he will accomplish. Blessings to Nathan and his family.

  7. Mary Hayes says:

    Rich – You really captured the spirit of the Hayes family. Their intelligence, love, and optimism shine through your well chosen words. And Nathan is depicted accurately as the amazing young man I know him to be. Thank you for a splendid article!!

  8. Kevin Rusco says:

    I really enjoyed your story. I am a 61 year old man with RP. I was night blind as a teenager and finally stopped driving when I reached 40. I came across an article about a study done by the national eye institute in Dec 2011 and it discussed the possibility of a spice called Termeric and it’s potential to stop the progression of some strains of RP. I felt I should share this as I’m always searching for help. Good luck in life and always keep a positive attitude.

  9. stefania says:

    I don’t have RP but my best friend does, and yes, a positive approach makes all the difference with that comes a strong will to overcome obstacles of any kind. My friend is a sculptor and painter his work comes from the heart and it’s truly beautiful. Still will are all hopeful a cure will be available soon…and it will, and you will be all be people that will be much better that the rest of us, because you will have learned to see with your heart.
    Lots of love to you all

  10. Noelina says:

    Nice story. Nice attitude and supportive family. I am a 61 year old woman with RP. I live in central New Jersey but one of my eye doctors is at the Wills Eye Hospital in Philadelphia – Willseye.org. Please go to their website Wills Eye Hospital and read the article “Miracles Happen at Wills Every Day”. Specifically, click on the article on Fran. I spoke to my doctor about this and he said this procedure can only be done after one gets blind. There is hope for us.

  11. Seraphina Botero says:

    Wow! My best friend has RP and he hopes to come up with a cure too! He struggled to make friends because of his disability as a teenager, but eventually he proved himself to be just as good as others! I have very severe OCD but I refuse to ever let it from achieving my dreams. Keep a positive attitude nathan, and I hope you’ll be cured someday! You will be able to accomplish anything you want and never let your disability prevent you from achieving your ambitions

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