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When asked about her 11-year-old son, Bjorn, Doria Brooks chuckles proudly and says, “He has a lot going on. Bjorn is mastering jujitsu and working on an acting career. He’s also a real ladies’ man with a great sense of humor.” But Bjorn also has a lot going on in dealing with the retinitis pigmentosa that has taken much of his vision; he’s already learning Braille and how to use a cane to navigate. “He gets around well in familiar places, like home, but needs help when he is someplace new,” says Doria. Though Bjorn has yet to begin the journey into adolescence, vision loss has presented formidable, adult-level challenges. He understands that retinitis pigmentosa (RP) can cause him to go completely blind. His mother says, “At first, he didn’t get why I was pushing him to learn Braille and use a cane, but now he understands that he can lose all of his vision. My husband, Bernard, and I are very open and honest with him about his retinitis pigmentosa. As parents, we need to do everything we can to prepare him. We are even helping Bjorn learn about the eye and why his vision is limited. He understands what is happening. I know he has tough days, but there are days where he can make fun of it, as well.” The Brooks family knew something wasn’t quite right with Bjorn’s eyes shortly after he was born. Early on, the doctors reported that he had nystagmus (roving eye movements) and strabismus (couldn’t align both eyes), which are often treatable. But after a couple of years, experts at Johns Hopkins University also diagnosed him with RP. Doria says that family became active with the Foundation Fighting Blindness, because “the Foundation is about action, not just talk.” Inspired to raise money for research, the Brooks family have done a great job organizing teams and raising money for the 2008 and 2009 VisionWalks in Baltimore. Doria adds that she was surprised that before the walks, many friends and family didn’t even know that Bjorn had a vision problem. “We realized that we weren’t communicating our challenges to people we know. It taught us a lot about ourselves. But we have had so many people come out and support us, even during the recession.” The Brooks family believes that faith, hope, and action are all important in moving forward with Bjorn’s retinitis pigmentosa. Doria says, “I feel blessed that the Foundation is in the right circles to make things happen. We understand well that finding a cure takes research and money, but what I tell Bjorn is that he was actually born at the perfect time to have this vision disability, because so much great research is underway.” |
