One Mom’s Goal to Help her Son: The Foundation Fighting Blindness

Amy Hayes of Chicago, IL, is raising money for the Foundation Fighting Blindness (FFB), a national nonprofit organization that is the world’s leading private source for retinal disease research funding. On June 9, she and her family are participating in the eighth annual Chicagoland VisionWalk, which is this year’s major fundraiser for the FFB. I learned about Amy and her journey through her article about her son Nathan, who was diagnosed with retinitis pigmentosa (RP), a degenerative disease which leads to blindness, in November 2010 at the age of 10.

Nathan and his parents
Nathan and his parents

So far Amy and her family have raised $9315 — their goal is $25,000.

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IP: When did you first notice Nathan wasn’t seeing well and what did you do for him?

AH: Nate (my husband) and I realized finally when Nathan was almost 3 years old that he wasn’t seeing normally.  One night while in the bathtub we noticed one of his eyes cross way in.  We took Nathan to a pediatric eye doctor in Barrington, IL, and she diagnosed him with “Accommodative Estropia”, saying that his weak eye will cross in so that the stronger eye can take over.  He started wearing bifocals right away because he was severely farsighted, which explained why he would feel our faces so often.

About two weeks after wearing his glasses, Nathan was reading.  By the time he was about four years old, he was reading chapter books!  We also started to notice then that he couldn’t see in the dark at all.  We brought this up to the doctor, but she didn’t seem to be concerned.

Fast forward to 2011 when the school district was getting rid of the gifted program. A friend had gotten IQ testing done for her son the previous year with Dr. Michelle Navarro. My friend encouraged me to do the same for Nathan so that he could qualify for gifted programs outside of the school district.  Thank God I took her advice and went because it was all due to Dr. Navarro’s findings that Nathan was diagnosed.  If it wasn’t for her, we’d still be with the same doctor, unaware of what was really going on with our son’s eyes!

Dr. Navarro found that Nathan had a genius IQ, but that he had a “visual processing disorder.”  She told me that a second opinion on his eyes was a very good idea.  I took her advice and we went to see Dr. Larry Kaufman in the city just a couple weeks later.  The doctor dilated his eyes and as soon as he looked at them, he saw that Nathan had severe retinitis pigmentosa.

We finally had the explanation that we needed, and I truly believe that Nathan was relieved.  He was now able to explain to everyone why he was so clumsy….always tripping over things if he was looking ahead, or bumping into things if he was looking down.  Nathan has no peripheral vision at all and is night blind.

Nathan Hayes
Nathan Hayes

IP: As a mom of a son with some life challenges, what kind of advice would you give others, to inspire them to take action and be more hopeful of making a difference?

AH: When you have a child who has a disability or other life challenges, I feel that it’s most important to be honest with your child and deal with the emotions and hardships openly.  We have wonderful communication in our house, and the atmosphere is always positive.  When Nathan was diagnosed, it wasn’t easy for us to remain positive, but we were lucky that Nathan’s amazing attitude is what lifted us up.  He was very direct with us and told us that he was ready to face the future of vision loss head on.  We have never looked back!

Our drive and motivation is to help find a cure for these degenerative retinal diseases.  We were fortunate to find the Foundation Fighting Blindness, and not only have they become our biggest hope for a cure, but they have also become one of our biggest support systems.  If you have a child facing a life challenge, then grab the bull by horns and make a difference!  Find an organization that supports your cause and volunteer, get active and build relationships.  Sitting back and feeling sorry for yourself or your child, or constantly asking yourself “Why us?”, will do nothing but take you backwards and have you relive the awful moment of truth over and over again.  Amazing advancements are made everyday, so why not try to be a part of having those advancements or cures come sooner than later?!

IP: Who inspires you and why? 

Through the foundation I have met many wonderful people with vision loss and their families, but one man always stands out in my mind.  John Corneille, a legally blind lawyer out of Dekalb, IL, has had retinitis pigmentosa since he was a young lad.  John has done amazing things with his life and has worked so hard to spread awareness of blinding diseases.  He owns his own law firm and is the director of planned giving for the Foundation Fighting Blindness.

John has charmed many with his witty ways….even Cindy Crawford and April Lufrui (Mrs. World 2012…..and another retinitis pigmentosa sufferer).  With the recent FDA approval of the Argus II “bionic retina”, there’s hope that John and many others could actually get some of their vision back.  There are so many stories of hope on the Foundation Fighting Blindness webpage that are sure to inspire you.

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Teagan Hayes, 11, Nate’s sister, wrote a poem after he was diagnosed with retinitis pigmentosa:

“If I couldn’t see”

If I Couldn’t See

If I couldn’t see,

I’d be in my dreams,

I’d find my way around,

And try not to fall down.

I’d listen and hear,

with my very own ears.

I’d ask for help,

To walk around,

Then I’d memorize the whole town.

The streets, the walls, and the turns too.

Then I’d imagine,

The sky so blue.

By Teagan Hayes

How to help:

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This entry was posted in Foundations, Inspiring Organizations, Inspiring People and tagged , , . Bookmark the permalink.

One Response to One Mom’s Goal to Help her Son: The Foundation Fighting Blindness

  1. Amy Hayes says:

    Thank you so much for sharing our story with your followers. We appreciate your help immensely.

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