In Their Own Words: Meghan Downing, 11, Santa Barbara, California

Image of Megan on surfboard

Disease: Stargardt disease, the juvenile form of macular degeneration, a retinal disease that affects the macula, or center, of the retina, causing progressive vision loss

Family: Pearl (mother), Dennis (father), Sean and Erin (half-brother and -sister, ages 27 and 25)

Pearl, on her daughter, Meghan

“In May of 2011, Meghan’s violin teacher noticed she was struggling to read notes. Then we saw she was sometimes using her old glasses, the ones she’d had as a younger kid to correct a lazy eye, which she hated. And she was getting closer and closer to the TV. So we went to see a retinal specialist, who did a series of tests and told us it was Stargardt. At first, Dennis and I were devastated. I can’t tell you how much we cried about it. But Meghan’s amazing – how she’s handled the diagnosis and her condition. If you were to meet her, you wouldn’t know there was vision loss.”

Meghan’s vision:
“We’ve been told, by various specialists, that her vision is anywhere from 20/250 to 20/600 [the norm being 20/20]. But Meghan doesn’t consider herself visually impaired. She’s found a sweet spot in her peripheral vision, a way to manage seeing things. On the other hand, when she’s watching the TV, she’s a foot away. And her books need to be 36-point font, at a minimum.”

“She’s in the Girl Scouts and on a swim team. She surfs and does karate and Irish fiddling. She was doing classical violin, but when she couldn’t read the notes, we moved over to the Irish tradition, which is playing by ear. And, believe it or not, she’s really good at dodge ball. She loves it.”

Finding FFB:
“Mary Romo [a Foundation Visionary Award recipient] is a good friend of mine. I knew she had vision loss, from Stargardt disease, and after Meghan was diagnosed, Mary dialed me into her network and suggested getting involved in [the Foundation’s signature 5K event] VisionWalk. Our team, Meghan’s Posse, had 70 people and raised about $7,000.

“Due to the results of Meghan's genetic testing, she was also invited to participate in a Foundation-funded clinical study at Jules Stein Eye Institute at UCLA, where they’re doing tests and collecting data on Stargardt. So we’re kept very up-to-date on the disease and the research. And, previously, we had to fight hard and long to get the insurance company to cover testing. The Foundation study means we don’t have to do that anymore, which is a huge relief. Dennis and I both feel that we’re gonna have this thing licked in 10 years.”

The Future:
“We believe there will be a cure, but we’re also realistic. For instance, Meghan needs to know she’s not going to be driving a car when all of her friends are. That’s just not going to happen. That was a hard conversation to have. Thankfully, she’s in a really great school and she has a wonderful, supportive network of friends, including Mary Romo. Those two get on like a house on fire, and she’s a great resource for us and Meghan. She’s also an inspiration. She was a professional and raised children, and now she’s a grandmother and very active in the community. She sets a great example for Meghan.”