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6-year-old battling rare syndrome goes for black belt

Staff Photo: Keith Farner Evan Matesevac, 6, is scheduled to test for a black belt on Thursday at Karate Atlanta in Dacula. He has been active in Taekwondo for about three years as a way to stay active because symptoms of Prader-Willi Syndrome include low muscle tone and continuous feelings of hunger.

Staff Photo: Keith Farner Evan Matesevac, 6, is scheduled to test for a black belt on Thursday at Karate Atlanta in Dacula. He has been active in Taekwondo for about three years as a way to stay active because symptoms of Prader-Willi Syndrome include low muscle tone and continuous feelings of hunger.

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Special Photo Swimming is one of six activities or therapies Evan Matesevac, 6, is involved in, including physical therapy, occupational therapy, speech therapy, Taekwondo and horseback riding.

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Special Photo Evan Matesevac, 6, performs Taekwondo during a recent practice at Karate Atlanta in Dacula.

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Special Photo Evan's mother Lisa Matesevac, an audiologist, has read medical journals and other professional research to learn more about Prader-Willi Syndrome, which affects many parts of the body and typically leads to obesity, reduced muscle tone and mental ability.

DACULA -- Evan Matesevac's favorite thing about Taekwondo is sparring, especially with his older brothers. He's also proud of a butterfly kick he's mastered recently.

Like many 6-year-olds, Matesevac lost a tooth recently, and enjoys playing games on his father's smartphone.

He has a bundle of energy that allows him to do six activities each week, including swimming and horseback riding.

By the looks of Matesevac on the mat at Karate Atlanta in Dacula where he does jump spins, crescent kicks and butterfly kicks, his diagnosis of Prader-Willi Syndrome is not readily apparent.

PWS is a rare congenital syndrome that is diagnosed in about one in 15,000 people and typically leads to obesity, reduced muscle tone and mental ability. The syndrome is caused by a spontaneous event that happens at conception, Matesevac's mother, Lisa, said. It's genetic, not inherited, and is a missing part of a 15th paternal chromosome.

Despite the syndrome, Matesevac, after training for three and a half years, will test Thursday for a black belt in Taekwondo to become the fourth member of his family to reach the milestone.

He will do it on National Rare Disease Day, annually held on the last day of February to raise awareness for the 7,000 registered rare diseases around the world.

"This is to get people to think differently, and use the resources that we have as a community to advance the education and research for all of those rare syndromes," Lisa said.

Thanks to family support, Evan has developed plenty of motor skills, balance and strength in the Tiny Tigers class of children 3 years old through 6 years old at Karate Atlanta.

"He couldn't balance on one leg, he couldn't jump and not fall," said Angela Hughes, who has trained him at Karate Atlanta, of when Evan first started Taekwondo. "There was almost no jumping. Now, it's almost like he has no limitations."

The Lawrenceville resident can also do 25 to 30 pushups, and has developed a six-pack in his abdominal muscles, something doctors have said is almost unheard of for someone with PWS.

Yet unrelated to PWS, Evan also has severe food allergies to eggs, nuts and milk that has forced the family to make a concerted effort for meal plans.

"It's actually forced us to develop a very, very healthy eating style for him," Lisa said. "He eats really only fruits and vegetables and lean meats, whole grains. The way all of us should eat, but don't, that's how he eats. That's how we've managed his weight and kept him active."

But part of PWS is a constant feeling of hunger that could kick in at any point, Lisa said.

A recommended therapy is a growth hormone that he's taken since he was six months old. The hormone treatment helps Evan reach his height potential, Lisa said, and develop muscle mass to burn more calories.

Most people with PWS have a restricted diet of 600 to 700 calories because they have a low metabolism, Lisa said.

Because of that restricted diet, the K.E. Taylor Elementary student has a dedicated lunch monitor so he won't eat food from his classmates or the cafeteria. In school, despite a low intelligence quotient being a known symptom of PWS, he has kept up with his peers academically, his mother said.

During her pregnancy with Evan, her third child, Lisa said she noticed something was different from her older sons who are otherwise neuro-typical. He didn't move much.

After Evan was born, the family was discharged from Northside Hospital, but Lisa refused to leave until further tests were done to identify why her baby could sleep completely through the night, and was otherwise lethargic.

Given her son's symptoms, Lisa said she was conflicted between finding a diagnosis and leaving the hospital. As an audiologist, she treats her son like a patient to find answers to his symptoms.

"Even though I wanted somebody to listen, I still wanted to bring my baby home," she said. "That medical side of me being an audiologist, I was analyzing him like I would one of my patients, but that mom in me was saying, 'Please make everything OK.'"

One of the first tests doctors performed found that Evan swallowed food into his lungs, and at three weeks old, he was diagnosed with PWS.

In the beginning, reading medical journals and leaning on her professional network for support, Lisa admittedly became immersed in PWS information.

"She would read too much," said Michael, her husband. "I had to, not stay uninformed, but not delve that deep. If we both were that deep into it, it would have been impossible. I had to calm her down, filter the abridged version."

For his part, Evan has rolled through the trials of the syndrome with a glowing attitude, his parents said. On a recent Monday when he was off from school, Evan had three doctor's appointments, but never cried, and even threw his arm out to have blood drawn.

"How can you not do everything you can for that kid," his father said. "All this stuff we put him through, he almost never protests it."

While there isn't a cure, Lisa said a France researcher has found a medication to control hunger that has found some successes in adults. Lisa said she's cautiously optimistic about a potential treatment.

To better handle the symptoms of the syndrome, Lisa said she thinks in chunks of time, such as this year, not when Evan could go off to college.

"If we could have that treatment," she said, "if that was right around the corner. If there was something that could let him lead an independent life, that would be the best gift to me. I would give everything in the world."