Joanne has been affected by Ocular Albinism throughout her life, even though she never had the eye disorder herself. When she found out her son, Ryan, had OA she was prepared. “He was the third child in my family to have it,” said Joanne. “I knew what to do, how to get services and the kinds of things we needed to do to help him with his diagnosis.” Despite having OA, this 13-year-old has been resilient and hasn’t let it control how he spends his time. Ryan is an active musician playing piano and trombone as well as playing golf. “I have no problem figuring out how to walk around the golf course,” said Ryan. “It’s just figuring out where my ball is.” When discovering new pieces of music, Ryan has his own technique of learning. “It’s easier for me to use my ear and my other senses to learn the music,” said Beam. “Music encourages me to use my imagination.”
Ocular Albinism is an eye disorder characterized by deficient levels of melanin. Ryan’s Ocular Albinism only affected the pigment in his eyes, not his skin or hair, but it did impact his sight. Through his mom’s personal experience with this eye disorder, she has been able to create a positive environment to help Ryan succeed. “Let’s focus on the things he can do,” said Joanne.
Ryan is not alone in his family. He has two cousins who also have OA. His cousin, Mack, started to notice the effects when he was around age 12. “I’ve always played sports,” said Mack. “I realized it would be a challenge for me to see the same things as my friends, but I’ve adapted in other ways.” Mack runs cross-country in the fall and track and field in the spring. His long-term goal is to go to medical school after completing college. Ryan feels very lucky to have Mack to look up to and ask questions about living with OA. “Being with my cousin, who has had some of the same vision challenges, makes me a lot more comfortable about it,” said Ryan. “It makes me feel like I’m not the only person alive that has Ocular Albinism.”
Mack has been trying to help his younger cousin with OA by having long talks with him and sharing advice. “Don’t pay attention to what people say,” advises Mack. “Stay positive and understand this limitation will create new challenges. This can end up making you into a better person in the future.” Both Ryan and Mack aren’t going to let Ocular Albinism take away their hopes and dreams of success in life. With the help of their families, they have already learned they can achieve anything they set their minds to.
Unfortunately, not all families are this well prepared when they are faced with a newborn infant with a vision disorder. That’s where The Vision of Children Foundation helps by providing information, education, and resources to families throughout the world. The Vision of Children’s mission is to fund vision research to find a cure for genetically caused vision disorders and blindness in children and to provide support to families affected by these conditions.