Sixteen-year-old Clay Whitaker, left, with his brother Nick Whitaker, 18, and his sister Sydney LeBoeuf, 12, outside of their Lake Charles home. (Ashley Withers / American Press)
Clay Whitaker sits in his neighbor's police car in this 2007 photo. Whitaker said he want to be a police officer when he grows up. (Special to the American Press)
Lake Charles teen won’t let rare condition stop him
Last Modified: Tuesday, July 10, 2012 1:40 PM
By Ashley Withers / American Press
Clay Whitaker is putting on a show.Standing on a makeshift stage in his backyard with a PVC pipe as a microphone and his sister’s old toy guitar in hand, Clay is a star.
He belts out his favorite country songs and then, an original song he has made up about his neighborhood.
“This song is for you,” he said, pointing to his mom, Carla LeBoeuf.
A look of pure joy takes over Clay’s face as he performs.
“He’s out here every day. It’s the Clay Show,” his older brother, Nick, said. “I don’t know what we would do without him. There’s never a dull moment with him around.”
Whitaker, 16, has been diagnosed with Rubinstein Taybi Syndrome, a rare disorder that delays cognitive and physical growth. July 3, 2012, marked the first World RTS Day, a day dedicated to raising awareness about the disorder.
Though most people have never heard of the condition today, it was even more scarcely known when Whitaker was born in Lake Charles in January 1996.
“We were ready to go home. He was dressed, the pictures were taken, and then his pediatrician said she didn’t know what was wrong, but something was wrong,” LeBoeuf said.
Whitaker’s pediatrician called in a specialist, but he wasn’t sure either. They gave him an echocardiogram and sent it off to Tulane Medical Center in New Orleans.
Whitaker was diagnosed with a malfunctioning aorta, a condition that was not detectable in the womb.
“It was like a kink in a garden hose. His heart was pumping blood normally, but it was back flowing into his heart,” LeBoeuf said. “At just six days old, he flew to Tulane for an arterioplasty.”
After his heart surgery, Whitaker faced a host of respiratory issues.
“His first year of life, we were constantly in the hospital,” LeBoeuf said.
She said they tried physical therapy, occupational therapy and “everything that we could do.”
“He was delayed. Everything was delayed — growth, milestones; we couldn’t find any answers. But there were too many anomalies for it to be nothing.”
In 1999, LeBoeuf was working as a teacher and she logged onto the Internet at school to research her son’s condition.
“I put his heart defect into the search and the name of this syndrome, Rubinstein Taybi, popped up. When I opened the page with the pictures, there was no doubt that was what it was. Not that they all looked the same, but like with Down’s (Syndrome) there were enough features similar that it was unmistakable.”
The family then went to a geneticist in New Orleans to confirm that Whitaker had RTS.
Whitaker was 3 years old when he received an official diagnosis. He is one of only nine people in Louisiana to have been diagnosed with the condition.
“We just had a name really. It just made it easier. It was like a weight had been lifted because it wasn’t just me seeing things. We had something identifiable and we had other people’s experiences to learn from,” LeBoeuf said.
RTS affects about one in 100,000 children. They are affected cognitively and physically; some have tethered cords and seizures — and only 50 percent with the disorder can speak. RTS children are also generally characterized as loving, friendly and happy.
“We had to make some changes, like Clay is limited because of his bone fragility. His bones break pretty easily. We have to watch running or trampolines,” LeBoeuf said.
“No trampolines!” Whitaker added.
“And ‘Stranger Danger’ is a constant,” LeBoeuf said.
“He’s friends with everyone,” his brother Nick said.
“But I don’t worry about him. I worry about other people reacting to him. He’s so accepting of everybody that I would hate to find out that someone was telling him to do something inappropriate so they could laugh. But for the most part, we haven’t run up against anything like that,” LeBoeuf said.
After his diagnosis, Whitaker was enrolled in early invention at Kaufman Elementary School.
“At first, it was more of a socialization thing for him to be around other kids and to be in an environment without me. He was learning things, mostly self-help things,” LeBoeuf said.
When Whitaker was 7 years old, he was moved into a more traditional classroom setting with a new teacher, Lee Sensat.
“She single-handedly turned his education around. She taught him how to read, how to break down words. He was doing math with her,” LeBoeuf said. “When she told me that, I was like ‘good luck with that.’ But she said she would and she did.”
Whitaker is on the higher end of the RTS spectrum. He now reads at a lower elementary school level, an impressive feat his mother said.
“He reads all the time. Every morning he wants to read; every night before we go to bed he wants to read a book,” Nick said.
Whitaker said his favorite book is “Glasses for D.W.” by Marc Brown. He said he has read it “thousands of times.”
Last year, he and his brother attended Barbe High School together. Whitaker was a freshman and 18-year-old Nick was a senior. It was the first time the two had ever been in school together.
“We had fun. He put limitations on what I did, but it wasn’t like ‘oh I’m not going because I have Clay,’” Nick said. “I’d always walk him to class and I’d introduce him to my friends and he’d introduce me to his friends. I’d get a whole new set of friends and he’d get a whole new set of friends. I had to take a freshman class my last hour of the day and all of them knew Clay.”
At Barbe, Whitaker got to work out with the football team.
“He blows the whistle and tells them to work out,” Nick said.
“I say get down. Do another. Go team,” Whitaker said.
“The football team has a chant for him and they go...” Nick said.
“Clay! Clay! Clay!” Whitaker jumped in.
“He gets T-shirts. He gets all the shirts just like the players do,” Nick said.
“We went to basketball games, football games. What else Nick?” Clay asked.
“We went to every game there was,” Nick said.
“I would have never thought in a million years that those coaches would be so welcoming and the team too,” LeBoeuf said.
Whitaker will be able to continue in the special education program at Barbe until he is 21 years old.
After that Whitaker has some big plans of his own.
“I want to be a police officer!” he said.
Posted By: Kathleen Hunton On: 7/9/2012
Title: Way to go Clay....
What a wonderful article on our Buddy Clay...I should say Trinity's (RTS) Buddy.......Everybody just loves Clay.... Clay was our first RTS child that we met and it was great.....Carla you all are one of a kind and the best.....
Posted By: Kenna Hunt On: 7/9/2012
Title: Lake Charles Teen .......
Wonderfully explanatory article about Clay Whitaker and his development. I was very interested in how he was diagnosed, etc., because we didn't know what was wrong with our own son until he was 7 or 8. We still don't know what caused his condition but the general grouping is called Mentally Handicapped, or Developmentally Brain Damaged.
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