My son, Nathan, was diagnosed with retinitis pigmentosa (RP) in November 2010 at the age of 10. My husband, Nate, and I had never heard of RP and were devastated to find out that it was a degenerative retinal disease that leads to blindness.
Our son, on the other hand, was almost relieved to find an answer to why he was constantly bumping into and tripping over things, and why he could never see in dim lighting or darkness.
"If I couldn't see" poemIf 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, written after her brother, Nathan, who was diagnosed with RP.
How to donate
Drop-off address: 1580 S. Milwaukee Ave., Suite 606, Libertyville, IL 60048
Main phone: (847) 680-0100
Fundraising event: 8th Annual Chicagoland Vision Walk, June 9, at Busse Woods Grove 5, Elk Grove Village. Begins at 9 a.m. with live performance by HiFi Superstar.
Nathan quickly adopted a positive attitude, which we're grateful for, as it has helped us look forward and fight for a cure.
He has been night blind ever since we can remember, but it was his loss of peripheral vision that we were unaware of.
The best way to describe the way people with RP see is to take two toilet paper rolls and look through them. This tunnel vision continues to deteriorate each year as more of the cones and the rods in the retina break down.
With the diagnosis came the reality Nathan would never be able to play football or drive a car. Navigating around at night or at the movies would require assistance.
Nathan tries not to look at himself as limited by his poor vision, but rather he challenges himself daily to learn new strategies to help him one day lead an independent life.
He trains in Shotokan karate and is part of the competition team at Focus Martial Arts and Fitness in Lake in the Hills. Sensei Jim O'Hara works hard to give Nathan tips and techniques to use his other senses when doing his karate or agility training so he won't have to rely on his vision to be successful.
Our hope is a cure for RP and other degenerative retinal diseases will be found and these strategies won't be necessary.
It is the Foundation Fighting Blindness, a national nonprofit organization that is the world's leading private source for retinal disease research funding, that provides us with hope and support.
The FFB's mission is "to drive the research that will provide preventions, treatments, and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher Syndrome and the entire spectrum of retinal degenerative diseases."
The FFB was started in 1971 by a small group of families that were affected by these degenerative diseases. FFB's chairman (and one of the co-founders) is Gordon Gund, a successful businessman who was majority owner of the NBA's Cleveland Cavaliers and the NHL's San Jose Sharks. Gund is blind from retinitis pigmentosa.
Since its inception more than 42 years ago, the foundation has built a 50-chapter national network of volunteers and has raised more than $450 million toward its mission. The Chicago Chapter serves all of Illinois.
Nathan and I were named co-youth chair and co-chair, respectively, along with Mark and Jack Falejczyk of Elk Grove Village for this year's major FFB fundraiser. The eighth annual Chicagoland VisionWalk will be at Busse Woods in Elk Grove Village at 9 a.m. June 9.
Participants come from Chicago and the suburbs, as well as throughout northern Illinois.
Last year, we formed a team -- named Team Focus -- in honor of the karate dojo that has been so instrumental in Nathan's growth and development. In 2012, we raised more than $15,000 from friends and family alone. This year, we are reaching out to corporations in hopes of gaining sponsorships to meet our new fundraising goal of $25,000.
The money our team raises goes back to funding research done in our area by Nathan's doctor, Dr. Michael Grassi.
The VisionWalk is a fun-filled family event with activities for the whole family, including live entertainment this year by the Billboard Music Award winning band HiFi Superstar.
We encourage people to come on out and walk with us to end blindness.
Go online and check out the Foundation Fighting Blindness and the Chicagoland VisionWalk at www.FightBlindness.org/ChicagoVisionWalk. Form a team and sign up, or just follow the links to make your 100 percent tax deductible donation. You can also mail in a donation to the FFB at 1580 S. Milwaukee Ave., Suite 606, Libertyville, IL 60048.
Your help could get that cure here sooner than later for the many who suffer from vision loss or blindness.