Richmond Chapter Highlights
Scout's HonorEighteen-year-old Rohan Parekh is an Eagle Scout. He hikes, backpacks and camps out. He’ll soon graduate from Clover Hill High School in Midlothian, Virginia, then head off to American University, where he’ll focus on law and public policy. “In D.C., I’ll check out some internships, to see if that’s what I want to stick with,” he says. Rohan’s also a twin. His sister, Radhika, will be at the University of Virginia next year, studying psychology. “She’s really supportive,” Rohan says. “Whenever I need anything, she’s there. And I know that, even when we’re in college, she’ll definitely call and check up on me.”
Seven years ago, Rohan was diagnosed with Usher syndrome, an inherited condition characterized by hearing impairment and progressive vision loss, the latter due to retinitis pigmentosa, or RP. Rohan has been able to achieve everything mentioned above because, thus far, his hearing and vision loss have been minimal. His hearing went first, in elementary school. “He had to wear hearing aids,” says Beena, his mother, a hospice social worker. “But his hearing has stabilized, so he doesn’t wear them anymore.”
“I haven’t noticed the hearing loss too much,” Rohan says. “Maybe higher pitched sounds I don’t hear as well, but it hasn’t affected what I do.” As for eyesight, he sits at the front of the class and close to the TV. “And at night,” he says, “I have a hard time seeing. I can’t drive at night. But I drive throughout the day. I can see road signs and everything."
Beena and her husband, Nikhil, an assistant vice president at Pfizer and a chemist by training, know, however, that whether Rohan suffers from RP or Usher, his vision will progressively worsen. So they keep up on the latest retinal research, information on which they receive from the Foundation Fighting Blindness. The Parekhs, originally from Bombay, India, have been raising funds for the Foundation since 2007. Most recently, they set up a page on VisionNation, the Foundation’s customized fundraising site, in the name of Beena’s father, who passed away last December.
“We felt that one of the ways we could honor him was to have people give to FFB in his memory,” Beena explains. “So we set up an online page, and a number of people have given. It’s an organization that was dear to my father, because his grandson was very dear to him.”
Thus far, the Parekhs have raised $5,800. And with Rohan and Radhika, a fraternal twin who shows no signs of vision or hearing loss, going off to college, “we have plans to be even more involved in the Foundation,” says Beena.
Rohan, who also plays bass guitar, admits that he hasn’t had a lot of time to fit research on Usher and RP into his busy schedule. Then again, he’s not planning on a career, like doctor or surgeon, where he’d have to rely on his eyesight. But he has read up on one fellow retinal-disease sufferer—Erik Weihenmayer, an adventurer and motivational speaker who, at 13, lost his sight completely to retinoschisis. Now 42, Erik has, among other feats, scaled the world’s highest summits, including Mount Everest, the first and only blind person to do so, in 2001. “I read his autobiography,” Rohan says. “It was very inspiring—and not just because he’s lost his sight. As someone who hikes and climbs mountains, it was definitely applicable to my own experiences.”
Those experiences are what encourage the Parekh family. “We’ve accepted Rohan’s diagnosis, and he’s doing well in all areas of his life,” Beena says. “We know that he’ll do fine no matter what is ahead of him.”