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April Marsaglia’s grandfather suffered from retinitis pigmentosa, an incurable retinal disease that causes progressive vision loss, so when she noticed her son Bryce often tripping over things that seemed to be in plain sight, she decided to take him to see an optometrist. Bryce was four years old at that time. The optometrist noticed that something wasn’t quite right and gave him a prescription for glasses, but never mentioned any problems with his retina. April continued to take Bryce in for yearly appointments and it wasn’t until a few years later that they got some devastating news. At a regular appointment, the doctor asked to speak with April privately. The optometrist suggested that April take Bryce to see an ophthalmologist for further tests. Just a couple weeks before his eighth birthday, Bryce was diagnosed with retinitis pigmentosa. Like his grandfather, he would continue to lose his sight.“When that first doctor asked to speak with me privately, I knew what it probably was,” says April. “So, we were kind of prepared, but when you hear the words, you’re not expecting the emotions that come through.” The diagnosis was initially very overwhelming and it took a toll on them. “One day, Bryce came to me and said, ‘I can’t believe I’m going to be blind,’” remembers April. “I comforted him and then I told him we had a choice. We could be upset and depressed, or we could do something about it. And that’s when we started searching for ways that we could help.” April was already using the Foundation Fighting Blindness as a resource for getting more information on retinitis pigmentosa. On one of her frequent visits to the website, she found information about VisionWalk, the Foundation’s national signature fundraising event, and that there was one being held in St. Louis. The St. Louis VisionWalk was about a month away, but April formed a team “Bryce Bryce Baby” and immediately started raising money for the walk. “We started sending out emails and we actually used that as an outlet to tell our friends and family about what was going on with Bryce,” says April. As a web programmer, April was comfortable using the online fundraising tools, as well as social media outlets to garner support for her team. “People always want to know what they can do to help and now we tell them that they can support the VisionWalk and help us find a cure.” Since Bryce’s diagnosis, April’s mother, Rebecca Montgomery, has been a rock to her grandson. Though Rebecca lives nearly 250 miles away, in Kansas City, she had always participated in the St. Louis VisionWalk, other Foundation events, and Bryce’s doctor appointments to show her support. This year, since April is unable to participate in the St. Louis VisionWalk, the Marsaglia family is taking their “Bryce Bryce Baby” team to the Kansas City VisionWalk instead. The family’s involvement with the Foundation has helped them to feel like they’re doing something about the situation. “What surprised me about our involvement was the networking,” says April. They were happy to meet other families dealing with similar diseases, including a family with a son the same age as Bryce, who also has retinitis pigmentosa. “It is great that Bryce had someone to talk to who knows how it feels to have RP.” Bryce, now 11 years old, still has good visual acuity, but he has lost 50 percent of his peripheral vision. “It amazes me how matter-of-fact Bryce is about having RP. He has actually helped me not to dwell,” says April. “The best thing you can do is get out there and help. I can’t wait for the day when they find a cure, so we can all celebrate. That’s going to be a really fun VisionWalk!”
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