He could not, however, see it all. Derek, who’s now 11, has retinitis pigmentosa, or RP, an incurable disease that causes progressive vision loss. He was diagnosed at the age of 18 months and, because of extremely limited peripheral and distance vision, declared legally blind at age 3. So that first time, sitting in the cheap seats, “he could hear the engines roaring, but he didn’t know the race had already started,” Anita says. Since then, the Wynnes have made sure they get seats at the start/finish line, no more than 15 rows up. “That’s perfect because he can also see the pits from there,” Anita explains. If Mom sounds especially vigilant, in part it’s because she and her husband, Jeff, lost another son, Jack, to drowning when he was two-and-a-half years old. Derek was a newborn at the time, and, unbeknownst to Anita, Jack had slipped out the back door of the family’s New Jersey home and stumbled into the pool. Although Jack was never diagnosed with RP himself, he did have to wear glasses, and a doctor later told Anita that his vision was worse than Derek’s at that same age. After Derek’s diagnosis, Anita visited every retinal specialist she could in the Northeast and, via the Internet, discovered the Foundation Fighting Blindness, “which had everything I needed to know – about research, stories of other families affected by retinal diseases, and how successful people with RP can be,” Anita says. “I was like, ‘He’s gonna be fine.’” The Wynnes’ involvement with the Foundation intensified a few years ago, after they moved to the Charlotte area, where Jeff, who’s in construction, was able to find work. “Charlotte had its first VisionWalk”—the Foundation’s signature 5K fundraiser—“in 2007,” Anita says, “and we’ve had a walk team ever since.” The team, in fact, changes its name every year, based on a contest among classmates at Derek’s school, where the 6th grader is a straight-A student. One past name was “Derek and the Dominoes.” This year, it’s “Derek’s Dream Team.” Another source of support has been the charitable NASCAR community, including Victory Junction, a camp founded by the Petty family in 2004 as a refuge for chronically and terminally ill children. In the summer of 2008, Derek spent “genetic-disorders” week there, free of charge and without parents, and “had the best week of his life,” Anita says. “He did not want to come home.” No wonder: There was a water park, a baseball field, a theater, zip lines, archery and NASCAR-related activities. “They even got him on a horse,” Anita says. “I’ve never been able to get him on a horse.” As much fun as Derek has, and as good as he is at coping with RP, he does get frustrated. “He reads,” Anita says, “but he gets headaches from it. And he can’t play catch with his dad out in the yard.” So, like his parents, Derek is dedicated to the Foundation’s focus on treatments and cures. “He knows that VisionWalk is not going to help just him; it’s going to help more than 10 million people struggling with retinal diseases. And he knows how hard it is. He has empathy for people with disabilities. He gets it.”
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