Five-year-old Benjamin Peters is a typical, active kindergartner at Edgewood Elementary School.
"There isn't much that slows him down," said his mother, Bethany Peters of Edgewood.
"He looks like a typical little boy with glasses when you see him. It's not until he walks into someone else's path that you realize he can't see," she said.
Benjamin is functionally and legally blind. He has an inherited disease of the retina that causes blurred vision, reduced ability to see colors and an increased sensitivity to light.
"When he can't see something, I sense his frustration," his mother said. "He has to take longer to do things. He has to rely more on touch."
At school, Benjamin sits at the head of his class so he can have the best possible view, and he is learning Braille and how to use a cane so he can be more independent.
"Not that he isn't already independent. He has no fear," Mrs. Peters said, describing his acrobatics in the living room performing somersaults from one piece of furniture to another.
"The hardest part is watching him struggle," she said.
Mrs. Peters is chairwoman this year of Pittsburgh VisionWalk, a fundraising event for the Foundation Fighting Blindness, a nonprofit based in Columbia, Md., with chapters throughout the United States.
The walk will be held at 10:30 a.m. Sept. 29 at Heinz Field. Registration opens at 9 a.m. There is no entry fee.
Now in its sixth year, Pittsburgh VisionWalk raised more than $60,000 last year and has a goal to raise $75,000 this year for research on degenerative retinal diseases.
Benjamin's visual disorder is called achromatopsia. While glasses assist his vision, he has trouble seeing fine detail.
"To see what you and I see from 300 feet away, he needs to be 20 feet away," his mother explained.
Because of the disease, he cannot differentiate many colors but sees them on a gray scale, she said. He has difficulty with depth perception and is completely blinded by bright lights and sunlight.
His younger sister, Atalie, 2, often senses what he needs and gets it for him, Mrs. Peters said. The two watch television together, although Mrs. Peters isn't certain how much Benjamin actually sees. He needs to sit very close to the television and keep the lights low. His condition actually allows him to see better in the dark.
He tells him mom, "I have very special vision because I can see in the dark."
Benjamin was about 8 weeks old when Mrs. Peters and her husband, Robert, noticed that his eyes were shaking. His pediatric ophthalmologist diagnosed him with nystagmus, or involuntary eye movement, and cone dystrophy. Genetic testing this year confirmed he had achromtopsia.
At age 3, Benjamin underwent surgery to address the shaking of his eyes. His condition is not progressive. His eyes will not become worse, but at this time there is no cure or therapy to improve his vision.
Last year, Benjamin was the youth chair for VisionWalk. It was the family's first year to take part. They had just recently discovered the organization.
"We met so many wonderful people at the walk," Mrs. Peters said. "It was great because many of the people with these degenerative retinal diseases lead successful lives. There is a sense that it's going to be OK."
Ten million Americans suffer from retinal degenerative diseases, said Steve Sroka of the Foundation for Fighting Blindness. These include macular degeneration, Usher syndrome and retinitis pigmentosa. The foundation is the largest private funder of retinal degenerative disease research in the nation, having raised $500 million since it was founded in 1971, he said.
Recent progress in fighting these diseases includes a gene therapy program. A group of 20 young people with vision loss participated in the program and had one eye treated. All experienced a halt in vision loss. The participants are now having treatment in the other eye, Mr. Sroka said.
Also in development is a bionic retina that has received approval from the Food and Drug Administration and involves a microchip implant in back of the retina. "It's not very defined yet, but as the technology improves, we hope those affected will be able to see things they haven't been able to see before," Mr. Sroka said.
Sponsors of Pittsburgh VisionWalk include UPMC, the Western Pennsylvania School for Blind Children and Everett & Hurite Ophthalmic Association.
A morning snack and lunch after the walk will be provided for participants. Entertainment will include sports mascots, Star Wars characters, the local band Shannon and the Merger, face painting and a bounce house for kids.
For more information or to register: www.visionwalk.org.
Jill Thurston, freelance writer: email@example.com.