This article originally appeared in the News and Observer. Photos courtesy Grace Turner.
At age 8, Tyler Kirk started losing his eyesight to Stargardt disease, and he battled through Raleigh public schools learning Braille, guided by a white cane and tenacity.
A quarter-century later, he works as a securities lawyer in Washington, D.C., having memorized the layout of the Metro stations and the sound of the intersections he must navigate on his way to work.
“I know that when I come out of Farragut North, at a certain intersection, there’s a bakery,” said Kirk, 34. “I can smell the bakery. I can smell a Starbucks. I always get on the train at the same spot so I’m near the escalator.”
For the last four years, he and his family have circled the 1-kilometer track at Spring Forest Park, joining hundreds of others in the Triangle’s annual 5K VisionWalk. Put on by the Foundation Fighting Blindness, the event raised roughly $120,000 this year for research into retinal diseases.
The walkers in this year’s event carried extra optimism because clinical trials in Pennsylvania and Florida have shown vision restored in some patients who are treated with gene therapy. “That means kids putting away their canes and riding bikes,” said Lesley Ireland, the foundation’s associate director for events.
Nationally, $43 million has been raised to promote gene therapy, stem cell and pharmaceutical-based research to combat retinitis pigmentosa, macular degeneration and Usher syndrome – retinal diseases that strike more than 10 million Americans.
“We fight this war in our clinics,” said Dr. Diane Whitaker of the Duke Eye Center. “We fight it in our laboratories. We fight it in our schools and our places of worship. Every day is a challenge.”
Of the walkers Saturday, about 20 percent were blind or visually impaired. They looped around the park holding hands, leaning on shoulders and tapping canes on the asphalt. Jerrell Williams, a technician at Duke Eye Center who lost his left eye to cancer at age 5, walked behind his beagle, Spur, and his beagle-Rottweiler mix, Nala.
“I only wear glasses for protection,” he said, motioning to his dark Batman shades. “My right eye’s great: 20/15 vision.”
Further along the loop, Rocky Renya Jr. managed the route without a cane. At 73, a retired Army paratrooper, he began slowly losing his vision to macular degeneration around the end of his military career. With 20/500 vision, he can walk but not drive.
“I’m eating a lot of green spinach,” he said.
Ireland said the VisionWalk is meant to give hope for restored eyesight, and Kirk said he believes a fix is coming, though probably not in his lifetime.
As he walked, leaning on his fiance, Kristin Carbonara, Kirk said even wanting to be cured is a deeply personal decision. He worries that his disease might be passed on to his children, but as for himself, he’s not entirely sure he’d want a life with fully restored eyesight.
“It’s who I am,” he said. “It’s how I grew up.”
And he kept walking.