Joanne Beam has been affected my Ocular Albinism throughout her life, even though she never had the eye disorder herself. When she found out her son, Ryan Beam, had OA she was prepared.
“He was the third child in my family to have it,” said Beam. “I knew what to do. I knew how to get services. I knew 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. He also enjoys playing golf.
“I have no problem figuring out how to walk around the golf course,” said Beam. “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 is a tool to use your imagination.”
Ocular Albinism is an eye disorder where there are deficient levels of melanin. This makes eyes, hair and skin have color. Ryan’s Ocular Albinism only affected the pigment in his eyes, not his skin or hair, but it did impact his sight.
Through Ryan’s mom’s personal experience with this eye disorder she has been able to create a good environment to help Ryan succeed.
“Let’s focus on the things he can do,” said Beam.
Ryan is not alone in his family. He has two cousins that also have OA. His cousin, Mack Despard, started to notice the effects when he was around age 12.
“I’ve always played sports,” said Despard. “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. He hopes to go to medical school and become a surgeon. Mack has experience with a bioptic lens that helps him have 20/30 vision when he drives which also could be useful in other areas.
“I can see an advantage where I already have practice with something like this [the bioptic lens] in surgery,” said Despard.
Ryan feels very lucky to have Mack to look up to and ask questions about living with OA.
“Being with them makes me a lot more comfortable about it,” said Beam. “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 with him.
“Don’t care what people say,” advises Despard. “Stay positive and understand this limitation can offer new challenges. This can end up making me 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 Joanne they can achieve anything they set their minds to.