Some days, Payton Petty can see — not very well, but enough to make out shapes and colors.
Other days he can’t open his eyes at all, because they’re so swollen and inflamed, and even a sliver of light hurts. He’s legally blind.
Payton, 4, inherited a rare, unpredictable condition called keratitis from his mother and maternal grandmother.
Dr. Carol Karp, professor of ophthalmology at the University of Miami’s Bascom Palmer Eye Institute, who has treated all three generations, describes the condition as “congenital corneal vascularization, with scarring.’’
“We don’t fully understand it, and we hope to do genetic studies,’’ Karp said.
When he’s older, Payton might be able to have cornea transplants, she said, although new corneas could fall prey to the same genetic defect that now afflicts him.
He uses three different medicated eye drops.
Compounding his discomfort: environmental allergies that make his eyes itch and water, and tooth erosion that his father, Decature Petty, says relates to the keratitis.
Payton lives in Fort Lauderdale with his father, a 42-year-old disabled block mason, and his paternal grandmother, Aridine Bentley.
The house belongs to Bentley, who cultivates fruit and vegetables in the back yard.
Until Miami Herald Charities donated a $200 gift card recently, which the family used for a window unit in the living room, the house had no air conditioning, which aggravated Payton’s allergies.
He can’t have toys, like stuffed animals, that collect dust, so his playthings all are plastic.
Payton, who was born to Shantina Johnson and Petty at Plantation General Hospital in July 2008, seemed just fine for his first six months, his father said.
Then he got his first round of immunizations, and later that week, “wasn’t acting normal,’’ his father said. “He wouldn’t open his eyes, and they were puffy. He was like a different baby.’’
Payton, who loves dinosaurs, trains, mac-and-cheese and pizza, attends a pre-kindergarten program at Larkdale Elementary School. Karp, the ophthalmologist, hopes that in time, Payton will be able to attend a school for the visually-impaired and have access to state-of-the-art equipment.
On good days, he’s energetic and playfully silly. On bad days, he scrunches his eyes tight shut and won’t move unless someone physically guides him.
To go outside, he needs extra-dark glasses and a ball cap.
“When we did his mobility assessment, he just stood there,” said Cindy Wolke, the Lighthouse of Broward County teacher who visits for one hour each week. “If we took his hands, he’d do it, but it varies so, so much.’’
He’ll have to undergo “multiple surgeries,’’ she said, but he “stands a chance of losing what little vision he has by adulthood.’’
Lately, Wolke has been bringing a Braille machine so Payton can learn read and write in the language of raised dots.
He can’t take the machine to school because at 35 pounds, it outweighs him. Wolke said Payton likes to work, and “only cancels when he’s in pain.’’
One day recently, he delightedly stacked colored, rubber discs.
“I’m making a pizza tower!’’ he exclaimed.
The Lighthouse nominated Payton for Wish Book, saying: “Payton would love to receive Braille story books, which will help him to become literate, much like his sighted peers. ..Home improvements including a dehumidifier and an air conditioner to help with his allergies would be greatly beneficial.
“Also, he sleeps in the living room , so if at all possible a bedroom makeover so he can have a place to organize his things — very important for a vision-impaired child — and create a safe place for him.
“And lastly financial help with any low-vision devices or medical costs not covered by Medicaid.’’
That would include an assessment for magnifying devices, the devices themselves, and properly-fitting dark glasses, which Wolke estimated at $100. She said he would also benefit from an iPad for visual games and large-format print.
He can watch the 24-inch television in the living room, said his dad, “but he has to get right up on it.’’
Payton gets $695 monthly in government disability assistance. His father, who crushed a heel in a construction accident, does odd jobs and collects scrap metal, but spends so much time driving Payton to doctors that he’d be hard pressed to work a full-time job even if he could get one.