Benjamin Wilson was just five years old when he was diagnosed with severe abnormalities of the retina, the light-sensitive lining inside the eye. What had started as a routine eye exam ended with his parents being told he would have progressive, uncorrectable vision loss that would lead to blindness.
“We were shocked by the diagnosis. Benjamin had not been showing any signs of eye problems,” says Benjamin’s dad, Dave. Adds his mom, Vicki, “We were told there was no cure, no treatment at all. We didn’t know what his future was going to be.” After scouring the Internet and talking to the Foundation Fighting Blindness, Dave found the lab of UI genetics researcher Dr. Edwin Stone, professor of ophthalmology, Howard Hughes Medical Institute investigator, and head of the University of Iowa Institute for Vision Research.
After reading about Dr. Stone’s work, Dave and Vicki knew they would go to University of Iowa Children’s Hospital to confirm the diagnosis and find out more about Benjamin’s eye disease.
Two months later, Benjamin and his family drove to Iowa City for his appointment. Right away, it felt like home. “Dr. Stone didn’t want it to be scary for Benjamin and it wasn’t at all,” says Vicki. The doctors and nurses spent extra time with the family to explain his disease and the tests they would be doing.
The family learned the disease can be genetic and that both Dave and Vicki carry a recessive gene for it. A couple of years after Benjamin’s diagnosis, Benjamin’s younger sister, Chloewas examined by Dr. Stone. She is also affected. Chloe and her brother return every year for tests to determine how their eyes process light, field of vision, and, of course, vision and retina exams.
The retina is an extension of the brain which has layers of nerve cells that are responsible for detecting light. These layers include rods, which control peripheral vision and the ability to see in dim light; and cones, which affect central vision and perception of color.
Because the disease has affected his rods first, Benjamin’s eyes don’t adapt to dim light. He walks with others at night and is learning to use a white cane for when he’s older and living on his own.
Benjamin is proud to be a pioneer in genetic research into blinding eye diseases. He says he looks forward to his visits to Iowa City and laughs, “How many kids say that?” He even plans to go to The University of Iowa and wants to be a scientist for the FBI when he grows up.
Benjamin and his sister enjoy riding their bicycles, swimming, singing in their church’s kids choir, and spending time with friends and family. He has even raised money for medical research. He asked his friends to bring donations instead of presents to his 8th birthday, raising over $1,000 for the Foundation Fighting Blindness.
The entire Wilson family is proud of their connection with UI Children’s Hospital. “No matter what the future holds, we feel confident. We are so grateful to Dr. Stone and his staff for giving us hope,” says Vicki. Adds Dave, “This is a place where top-notch research is being done. There is nowhere else that could be doing more for them.”
As Benjamin sees it, he’s a lucky guy.