Sight is something we take for granted. To be able to wake up and see colors, shapes and the faces of the ones you love is something most of us don’t think about.
But Jackson Heagy’s days of sight are limited. He was recently diagnosed with a progressive eye disease called keratoconus. The disease causes “the cornea to warp outwards into a cone shape until it eventually rips,” Heagy said. “It distorts how the light is spread throughout the eye.”
Once the cornea rips, the person affected will go blind. Doctors have given Heagy, 20, three months to two years of sight.
This past weekend, Heagy and his mother, Dana Hopper, held a fish fry fundraiser to help cover costs of his treatment. They set up shop in the parking lot in front of Clean Beyond Measure Laundromat in Haw River, and began passing out plates.
The idea for the fundraiser came from Rhonda Graham, assistant teacher at Hopper’s youth ministry sports program. She’s held several other fundraisers for their church, World of Pentecost, as well as her ministry program. Graham also provided materials for the fish fry.
About three years ago, Heagy first began having changes in his vision, but he thought it was a normal part of getting older. Then he went in for a routine eye exam and was told he had the disease. Hopper credits her eye doctor, Neil J. Bulkawoski, for diagnosing her son.
Anyone is susceptible to keratoconus. It can come from eye-rubbing, which can result from allergies or environmental factors. Genetics plays a role, too, and people with the disease have an increased chance of passing it along to their offspring. Since Heagy has no family history of the disease, doctors ruled that his case was most likely the result of frequent eye rubbing.
Three treatment options are available.
The cheapest is scleral contact lenses, which cost $1,000 for fitting and $500 per eye. This would temporarily improve Heagy’s vision by gripping the eye and forcing it into the shape it should be.
Heagy has a pair of glasses to correct the vision he has lost thus far, but his decaying vision will cause his prescription to change frequently.
To halt that progression and save his vision, Heagy will need to undergo a special procedure on his eyes called crosslink surgery. Doctors will put vitamin D drops into his eyes and seal them in with ultraviolet light.
“They’ve been doing this in other countries for many years,” Hopper said, “but in the United States, the FDA just approved this procedure in 2016, so a lot of insurance companies don’t cover this.”
Bulkawoski explained that only four doctors in Burlington are able to perform crosslink surgery.
He also referred Heagy to Dr. Alan Carlson, who would be able to conduct the procedure.
The last treatment option would be a corneal transplant. Transplants of any kind can be extremely expensive, and patients risk their bodies rejecting the implants.
The community has come together to help raise money for Heagy so that he can graduate from Beyond Measure Barbering Institute and follow his dream of becoming a barber.
Sarah Stanley, owner of Love at First Sight Photography & Doula Services, has reached out to Hopper, asking to hold a photography fundraiser for her son. On June 15 and 16, Stanley will photograph people for sessions of 10 to 15 minutes free of charge. Each person will receive three gallery pictures edited by her.
While the event is free, Hopper and Heagy would appreciate any donations patrons are willing to provide.
To donate to Heagy’s treatment fund, visit https://www.gofundme.com/kc-patient-needs-crosslink-surgery