A Family’s Fight

When Grant Patterson was diagnosed with retinitis pigmentosa (RP) as a young child, it wasn’t much of a surprise. His family was familiar with this vision-robbing disease because his older brother had been diagnosed years before. At that time, doctors told Grant’s family that he and his brother had x-linked RP, meaning his mother was an unaffected carrier of the gene causing their disease.

Grant Patterson with his two daughters

Grant didn’t let his RP diagnosis stop him from doing the things he wanted to do while growing up. “As a child, all having RP meant to me was that I couldn’t see in the dark,” he remembers. He was still able to participate and excel in several school sports. “As I got older, though, I realized there’s a lot more to it than that.” Over the years, Grant had to make changes in order to adjust to his decreasing vision. “The hardest thing was giving up driving,” he reflects.

When Grant and his wife, Jamie, were ready to start a family, they discussed the possibility of their children getting RP. Because Grant’s condition was x-linked, he’d been told that his daughters may be carriers of the gene and that his sons would be fine. Jamie even checked with her doctors to make sure she was not a carrier of the mutated gene.

When their first daughter, Grace, was almost 4 years old, they started to notice that she was tripping over things at night. After failing a vision test, Grant and Jamie took Grace to an ophthalmologist who diagnosed her with RP. Grant’s mother and older sister were eventually diagnosed with the condition as well. It was devastating news for the family to find out that they, in fact, had a dominant form of the disease that could be passed down directly through generations.

“I took it a bit harder than Grant did, maybe because I’m sighted,” remembers Jamie. “Finally, Grant told me, ‘Grace’s coping mechanisms are going to be modeled after her parents, so think of this as a simple obstacle in her life.’ So, that’s what we’re trying to do.”

Grace Patterson

Because Grace, now 7 years old, has so many family members with RP who lead successful and independent lives, she has developed a good understanding of the disease. She is even learning Braille and Orientation & Mobility skills. “She understands that people with visual impairments can do anything they want to do, but they just might do it a little differently than a sighted person. She has a good outlook,” says Grant. Grace also attends a school where 30 percent of the students are visually- or hearing-impaired, so she’s able to interact with children her age facing similar challenges.

The Patterson family has been involved with the Foundation Fighting Blindness for several years. “Grant’s mom had always been very active, probably since Grant was diagnosed almost 40 years ago. She was such a great advocate for finding cures and a wonderful role model,” says Jamie. Grant and Jamie have followed in her footsteps by supporting the Foundation through the Tampa Bay VisionWalk.

Last year, Grace was inspired by one of her favorite cartoons to start a lemonade stand to raise money for her family’s VisionWalk team. “She worked really hard,” says Jamie. Her lemonade stand raised more than $400! In addition to Grace’s lemonade stand, Grant and Jamie sent emails to friends and family, and hung up posters at their workplaces. Grant happens to work for Freedom Scientific, a company that specializes in hardware and software for visually impaired individuals. “We ended up having a team of 30 friends and family come out to walk with us,” says Jamie.

Their involvement with the Foundation serves as a great support system for the Patterson family. “It helped me realize that I’m not alone and other people are struggling, too,” says Jamie. They are very excited about the research that the Foundation is reporting on. “It’s all very encouraging,” says Grant. The family is looking forward to participating in the 2011 Tampa Bay VisionWalk later this year.