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Seeing it through: Gate City teens meet challenge of ocular albinism head on

August 19th, 2012 12:00 am by Marci Gore

Seeing it through: Gate City teens meet challenge of ocular albinism head on

John Matlock, 15, and his younger sister, Bryse, 14, both have ocular albinism. (Ned Jilton II photo)

When Bryon and Mary Beth Matlock’s infant son, John, was only 8 weeks old, they noticed something was not quite right with his eyes.

“His eyes just would never stop and focus,” said Mary Beth.

John has a twin sister, Jordon, and Mary Beth says Jordon’s eyes were focusing on things when she was 4 weeks old.

“We just knew something wasn’t right with John’s eyes,” Mary Beth said.

John was eventually diagnosed with both ocular albinism, an inherited condition in which the eyes lack melanin and pigment, and nystagmus, involuntary back-and-forth movement of the eyes. He is also classified as an albino.

Ocular albinism is characterized by severely impaired sharpness of vision and problems with combining vision from both eyes to perceive depth.

“We went through all the normal testings when I was pregnant and nothing showed up. But these conditions aren’t anything that can be detected while you’re pregnant. You don’t know until they’re born,” Mary Beth said.

A visit to a local pediatric ophthalmologist revealed disheartening news.

“He told us John would never be able to ride a bike, kick a ball or drive a car. He also told us these children are very intelligent, but said John would never receive the education he needed because the school systems don’t have the proper tools to teach him. We were devastated by this news,” Mary Beth said.

She and Bryon made the decision to take John to Johns Hopkins University in Baltimore, Md.

“There, we saw children who were much worse and had many more severe vision problems. Some were totally blind. The doctor we saw there told us, ‘Yes, your child is different. But he can live a very normal life, if you will let him,’” Mary Beth said. “[The doctor] told us as far as John never being able to kick a ball or play sports, she said that was mainly up to us. ‘You can put him in a padded room and never let him do anything or you can encourage him to play and get out and join his friends.’ And that’s what we did.”

Almost 18 months after John and Jordon were born, Mary Beth gave birth to Bryse.

“We knew as soon as Bryse was born, with the white hair and light eyes, that she had the same condition as John,” Mary Beth said.

Today, John, who will turn 16 in November, is a sophomore at Gate City High School and Bryse, 14, is a freshman.
Both teenagers are very involved in extracurricular activities and, despite what one doctor said, are active in sports and, with the help of some special eyeglasses, will eventually get their driver’s licenses.

Bryse served last year as the manager of Gate City’s girls’ varsity basketball team as well as the manager for both the girls’ and boys’ soccer teams. She hopes to be on the girls’ soccer team this year.

John, whose nickname is White Lightning, plays football, basketball and soccer at Gate City, and even scored a goal this past season in soccer.

“We try to make life as normal as possible for John and Bryse. To be honest, we probably push them more than we should. We just want to make sure they’re included and that they get to do the things they want to do,” Mary Beth said.

Although their parents try to ensure normalcy for both John and Bryce, the inevitable challenge still presents itself now and again.

“Sunlight really bothers their eyes. They are both very light sensitive and the biggest concern for me and Bryon is with them getting sunburned. We worry about skin cancer. We try to limit the hours they are outside,” Mary Beth said.
Bryse suffers from depth perception issues and narrow steps can be difficult for her to navigate. John’s eyes are extremely light sensitive, and he must always keep his Oakley sunglasses nearby.

Being typical teenagers, neither John nor Bryse is completely thrilled about the extra care and attention they receive at school from teachers because of their vision issues.

“The teachers worry more about you. You always have to sit in the front. So while all your friends are in the back, laughing and having fun, I’m here in the front,” said Bryse.

Mary Beth points out that Bryse, who enjoys going to school for the social aspect of it, seems to take everything in stride.

“She’s our social butterfly. If she actually learns something at school for that day, that’s just an added bonus. Socializing is just her thing,” she said.

Bryse does admit it’s not easy to return to school after summer break and see everyone else’s glowing tans.

“They’ll ask me why I’m so white and not tan like they are,” she said. “Sometimes that’s hard.”

Jordon, who does not have the same condition as her twin brother and her younger sister, is fiercely protective of her siblings.

“Let me get my cell phone and I can show you the jillion texts Jordon’s sent me asking me where I’m at, when am I coming home? I’ll have five missed calls. What’s funny is she knows where I’m at, and she knows if something’s wrong, I’m going to call her,” John said, laughing.

Jordon says she feels like it’s her responsibility to protect John and Bryse, especially at school.

“Sometimes I feel like they can’t do it themselves, so I do it for them. John and I have a twin connection, and I know when he’s nervous or upset about something. I can feel it in me. If he’s not nervous, I’m good,” she said.

Mary Beth says Jordon was born mature.

“She’s the one who keeps us all kind of grounded,” she said. “I can tell on her face what kind of day it’s been at school. She can tell me what’s gone on with [John and Bryse]. And nobody better mess with either one of them. Jordon will claw their eyes out.”

Looking ahead, Mary Beth knows graduation is not far off for her kids, but says she’s not worried about them surviving college life.

“The only thing that really worries us is the size of the classrooms. At Gate City, they’re in an average classroom of about 20 people. And most of their teachers are aware of their situation and know they need to sit up front. They are conscious of things like the glare from the windows. But as far as being able to make it in college, I think they’ll be just fine,” she said.

A straight-A student and a whiz in math, John hopes to go to Virginia Tech and major in engineering upon graduation from high school.

Bryse wants to go to Virginia Commonwealth University and hopes to be an athletic trainer one day.

John, never one to shy away from any challenge, said he loves for someone to tell him he can’t do something.

Mary Beth said he’s always had this mind set.

“Whatever John’s challenge is, he’ll bust it wide open every time,” she said.

John said he likes to be able to tell someone, “I told you so.”

“When you actually do what someone says you couldn’t do, it’s fun looking back and saying, ‘You gave up on me, but I didn’t give up on me.’ The doctor said I’d never kick a ball, never drive a car, never get the education I needed. It’s so much fun proving people wrong,” he said. “It’s just fun being me.”

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