The Kid Parties with a Purpose

But there was something a little different about Benjamin’s party. There were no gifts for the birthday boy. Instead, he asked his friends to make contributions to the Foundation Fighting Blindness to help find cures for retinal degenerative diseases. Quite impressively, Benjamin raised more than $1,000. Benjamin says, "I had a lot of fun at the party, and who knew I'd raise so much money for FFB. I'm so proud and happy."

Benjamin was diagnosed with a retinal condition at the age of five after an ophthalmologist performed a routine eye exam, and a specialist soon after determined that his retinal function was not normal. “At the time we didn’t think anything was wrong with his vision, so it came as quite a shock to us,” says his mother, Vicki. Doctors now believe that his younger sister, Chloe, may also have the retinal disease.

Within an hour of learning that Benjamin had a retinal disease, his father, Dave, took to the Internet and came across the FFB Web site. Shortly thereafter, the family travelled from their home in Chicagoland (Palatine) to see Dr. Ed Stone, an FFB-funded physician-researcher at the University of Iowa in Iowa City. Stone and his team are on the hunt to find the genetic variation that is causing Benjamin’s vision loss.

The Wilsons have also become active with FFB, participating in chapter meetings, a symposium at Navy Pier, and the Artistry of Wine. Dave says that they are very excited about the progress being made in research, especially the gene therapy trials for LCA that are restoring vision in young adults.

Today, Benjamin has trouble seeing in the dark and needs large print materials or a magnifier to read his school books. He’s also learning Braille and mobility skills in case he loses more vision. But vision loss doesn’t stop Benjamin from being a kid; he enjoys riding his bike, building things with his Legos, and reading about hurricanes and tornadoes. He even cooks and sings in the kids’ choir at church.

And Vicki and Dave are very proud of their courageous, well-adjusted son. “He has a great attitude,” says Dave. “He has a wonderful sense of humor and loves to make everyone laugh and have a good time. He very rarely lets his vision issues get him down. He openly talks about possibly going blind one day, but he says it very matter-of-factly. We remind him that he will still be able to do whatever he puts his mind to and that he may just have to do it in a different way. We are so blessed to have him for a son.”