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Local boy with rare disorder celebrates 10th birthday

Published: Apr. 18, 2021 at 3:31 PM CDT
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LAKE CHARLES, La. (KPLC) - Ryan Orgeron turns ten on Tuesday, and for his family, it’s a birthday worth celebrating.

“Being special needs - it’s tough on him, it’s tough on a family,” says his dad, Ronnie Orgeron. “And so, when we did this birthday for him, he just gets excited, and to see that joy in a child.”

Affecting 1 in 15,000 births, Ryan was diagnosed with Prader Willi Syndrome (PWS). Part of PWS is that he can’t feel full and is constantly hungry.

“It stems from the chromosome 15,” explains his mom, Jill McKinney. “It’s a deletion or a defect, caused by the parent. And the biggest symptoms for that are obesity, intellectual disability, no muscle tone. The Prader-Willi syndrome kids, they need a constant bodyguard almost 24/7.”

Despite his diagnosis, Ryan is a thriving soon-to-be 10 year old who loves local first responders.

“It’s a big deal for him,” McKinney says. “He looks up to the police force and the firefighters and the ambulances. Anybody that can be first responders and help people. He’s got a very empathetic and compassionate heart as well, which I find that a lot in special needs kids.”

His parents, despite having to lock refrigerators and monitor his calories say they just want acceptance from the community and for their son.

”To keep him happy and healthy,” Orgeron says. “And that’s one of the biggest things. His health is always a concern for us.”

Next month is Prader Willi Syndrome awareness month. His parents say they celebrate every year with a crawfish boil and participate in the annual walk in Houma. They hope one day to host a walk here locally.

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