It Won't Slow Her Down
Sean and Michelle Nash, who live with their three children
in Chicago, are doing what just about any parent told his or her kid has a
retinal disease would do: preparing for two possible futures.
“We’re raising money for research and are really encouraged by what’s happening,” says Sean. “But we’re also guiding Gracie down a path that has more dancing, more swimming – stuff that’s maybe going to be easier for her than playing baseball.”
The Nash Family
Gracie, the eldest of the Nash children, is 7. And less
than a year ago, in December of 2011, she was diagnosed with Stargardt disease,
a juvenile form of macular degeneration, which affects the macula, or center,
of the retina, causing progressive vision loss.
“It was tough to deal with, even heartbreaking, at first,” Sean recalls. But that was before Gracie’s eye doctor recommended that the Nashes, who have two other daughters – Mackenzie, 3, and Lillian, 2 – check out the Foundation Fighting Blindness website. Soon, they were reading up on Stargardt disease and the many inroads researchers are making for its treatment.
Sean, who’s in the printing business, and Michelle, a 5th grade teacher, also noticed that the Foundation’s local chapter was planning its annual 5K fundraiser, VisionWalk. “So we got a team of about 120 people together,” Sean says. “We both grew up in the Chicago area, and have big extended families and lots of friends. It was great to see.”
And their efforts produced great results. The Nashes’ team raised almost $45,000.
As for Gracie – whose only sign of vision loss, thus far, is that she has to read books with a magnifier – “she’s aware of her situation,” Sean says. “We’ve been 100 percent honest with her. Whether she completely understands is another question.”
She may be too busy. Aside from being a 1st grader, Gracie takes dance and cheerleading classes and loves to swim and play chess, among other activities. “If you met Gracie, you’d know that having Stargardt disease won’t slow her down,” Sean says. “It’s probably not going to matter that much to her. She’s such an unbelievable girl.”
The Nashes, however, are realistic. They keep a keen eye
on the research the
Foundation supports, and plan to continue raising funds; but they’ve also
introduced Gracie to activities that, down the line, won’t demand acute
eyesight. And their involvement with the Foundation has introduced their
daughter to adults affected by retinal diseases.
“She’s been able to meet people in the later stages of disease,” Sean says. “She sees how they get around, and that they can live fulfilling, productive lives. That’s good for all of us.”