A Marion boy with a rare sight disorder will have the chance to see the world in 20/20 vision thanks to a pair of electronic glasses, a Go Fund Me page and your help.
Kash Pressley is a 9-year-old boy diagnosed with ocular albinism, a disorder which has affected his vision since birth. However, with the community’s help, he and his family can afford electronic glasses to allow him to see.
The McDowell News spoke to Kash and his parents, Danny and Lisa Pressley, at their home in Marion on Thursday. During the interview, the shades were drawn with slight glimpses of light peeking through the living room.
“We keep the lights down to help with his vision,” said Danny.
Kash was born in 2007 with ocular albinism, a genetic condition that reduces the coloring (or pigmentation) of the iris and retina in the eyes, which has resulted in nystagmus (an uncontrollable rapid movement of the eyes back and forth) and a sensitivity to bright lights. According to the Pressley’s, one out of 20,000 in the United States has the disorder.
“He always tells me, ‘Dad, I’m not legally blind – I’m only half legally blind,’” said Danny. “For right now, albinism affects his vision at different levels. He’s got good spots and he can see well if it’s pretty close to his face. But outside, they said it’s like a camera flash every time he walks outside.”
“His depth perception is off,” added Lisa. “It’s the weirdest thing. If he’s going down a hill, he thinks it’s flat – and it’s hard to understand if you have normal vision – and if he’s walking up a hill, he’ll walk right into it. It’s strange.”
Yet, throughout the interview, the tone always remained optimistic and upbeat, sometimes self-deprecating.
“He goes to camp and he does really well,” said Danny, “But this year, he was beaten up so bad. Band-Aids, cuts on every hand, and I said, ‘What happened?’ He said, ‘Well, everyone was running and I was running with them, and nobody told me there was a turn’, and he kept running ran right off the cliff. Some people might be offended by that, but we want him to experience as much as he can, cause you never know with technology down the road, he might even get eye implants.”
Unlike most forms of impaired vision, ocular albinism can’t be treated with traditional eyewear like glasses or contact lenses due to underdevelopment of the fovea, or center vision of the retina, to transmit information of the image to the brain. However, conditions aside, Kash is like any other child. He goes to Swannanoa Montessori School in Black Mountain. He likes to build with Lincoln logs and toy cars, plays Minecraft and Madden football games with his dad, played sports like basketball and football when he was younger, and he’s been able to accommodate his vision through various means, whether it’s a magnifying dome to read one letter at a time or a desk seated 10 inches from the TV.
“That’s his perch,” said the Pressleys, pointing to the desk. “He watches TV over there and he’ll use his iPad and bring it close to his face. He can still go outside; his hours are usually dusk and dark, and when he’s in the sun, he wears his sunglasses, which makes people recognize him because he’s so unique and special. Everybody knows Kash.”
Then, an opportunity came when Kash and his family began looking up research on eSight, electronic glasses to assist the legally blind and those with low vision. The company is based in Toronto, Canada, with offices in the United States to allow for demonstrations. Kash and his family met with eSight in their Charlotte office in late September and had the chase to see 20/20 vision for the first time in his life.
“I could see a lot better after I tried them on,” said Kash.
In fact, according to his parents, the 20/20 enhancements were so remarkable that Kash could read a news channel’s ticker on a television eight feet away.
“They’re very futuristic,” said Danny. “They come with a controller that can adjust the zoom 24 times and bring all that to his face. He can adjust the tint, he can make it auburn or blue and see better. If he’s at school and listens to the teacher at the white board, he can actually freeze the image, look up at it while the teacher is talking and he can understand it better. It’s just unreal.”
The high tech glasses are currently $10,000, according to the Pressleys. And while they’ve been trying to scrape up the costs, other family members and the community at large has stepped up in a huge way: Donations have been taken at church and local businesses throughout town. Moondoggy’s Diner on the five-lane is advertising slips that send 10 percent of customers’ total bills towards the glasses during the month of October. Family members on the coast have taken up donations.
But one of the biggest contributors to help Kash was Danny’s sister, Tracy, and a surprise Go-Fund-Me page.
“My sister jumped ahead of us and started the page,” said Danny. “We’re just really humbled that people have come out and reached out. There’s people who are anonymous, people who we don’t know who they are that have given to us. We were shocked because we were hoping to save up during spring or summer and have the money to buy them, but she just jumped right in and took off.”
As of this reporting, the Go Fund Me page and other contributions have totaled $6,575 of their $10K goal.
“I actually sent money in today for them to start production and set his prescription,” said Lisa. “We’re hoping to have them by either Thanksgiving or spring-ish. There’s a lot of bad news out there in the world, and this is good news.”
When asked about the biggest thing he’d hope to see with his new glasses, Kash told his parents, “The mountains.”