STAMFORD, Conn. -- It's a rare disease that affects only 10,000 people in the United States — and an 11-year-old Stamford resident is one of them.
Kenny Backes has achromatopsia, a disease that leaves him with extremely low vision so he only can see in shades of grey. He also can be completely blinded by direct sunlight.
"Its extremely frustrating," his mother Megan said. "He can't filter light. He's never seen a rainbow."
On Saturday, the Backes family, along with friends and neighbors, is hosting a tag sale from 9 a.m. to 3 p.m. The money from the event, which also will have a basket raffle and a bake sale, will go toward Achromacorp, which is seeking a cure for achromatopsia. The tag sale will take place at 93 Ralsey Road.
According to the American Association for Pediatric Ophthalmology and Strabismus, a national organization devoted to quality eye care for children, achromatopsia is caused by an abnormality of the retina. In the retina, there are three types of cells called cones that are responsible for normal color vision. Children with achromatopsia have improperly functioning cones. Therefore, light isn't filtered, requiring people like Kenny to wear sunglasses to avoid bright light whether they are inside or outside because bright light blinds them.
Megan Backes admits she does get discouraged with his condition but said he is a healthy, happy child who is doing well academically at King School in Stamford and also wrestles and plays basketball.
"There is nothing wrong with him except his eyes," she said. "We have hope that there will be a cure very soon. They have come so far in the last few years."
The fifth-grade student loves to read and also enjoys math and science. In school, other than sitting close to the board or having a teacher give him notes to read, his school experience is just like any other student.
"I try to be as normal as possible," he said.
The family hopes to raise $5,000 at the tag sale.
"The money goes directly to the doctors," Megan Backes said about the event for the nonprofit group. "Nobody takes a salary or anything; we just fundraise. They (researchers) tell us what they need and we get it."
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