For someone so young, it has been anything but a normal childhood for Muskogee’s Sejin Whittle and Gore’s Mia Barnes.
Whittle, who is 11 years old, battles daily with Duchenne muscular dystrophy, a progressive disease that will only get worse. Meanwhile, Mia, only 3, was severely burned in a home accident.
However, the Bedouin Shrine Temple in Muskogee has tried to make their lives a little more ordinary, providing transportation to hospitals for treatments and follow up doctor visits.
Now, the duo will be the poster children for the Annual Bedouin Shrine Classic, which starts its week-long run on Monday, Jan. 7 and continues through Saturday, Jan. 12. Wednesday, Jan. 9 will be an off day for the tournament.
Sejin’s parents, Jennifer Dvorak and David Whittle, haven’t had many days off since Sejin was 3 when they started noticing he was having problems.
“He had a hard time going upstairs,” Whittle said.
Dvorak continues the story.
“We realized something was wrong,” she said. “We couldn’t lay him on his belly because he would throw up all of his food. The doctor said it was the lack of trunk muscles. But Sejin’s back was curved and it was odd looking. He’s real smart, but he seemed kind of delayed (physically) for some reason.”
Dvorak and Whittle took Sejin to see local doctor Mike Stratton, who referred them to developmental specialist in Tulsa. After a series of tests, Dvorak got a call from the specialist, who was requesting an immediate appointment.
“Sejin was 4 at this time and I called (Stratton) freaking out,” Dvorak said. “I said, ‘If anybody is going to tell me bad news, it’s you. You’re his doctor. I don’t want somebody I don’t know telling me something.’ I went to Stratton’s office and he called the specialist off the golf course.”
The diagnosis: Sejin had Duchenne where he couldn’t regenerate muscles.
“It’s like you start a puzzle and can’t finish it,” David Whittle explained about his son’s inability to build muscles. “They’ve been doing tests, but nothing’s come out promising. There’s no cure. He could walk until about two years ago.”
David and Jennifer were put in touch with the Shriners, who took them and their son to Shreveport, La.. Doctors there fitted Sejin with braces for no charge that would’ve normally cost $900. Sejin also now has a motorized wheelchair.
It should be noted that David and Jennifer are divorced. That doesn’t keep them from sharing in caring for their son.
“We’re here to take care of him,” David said. “We’re going to get him what he needs. He’s going to gradually get weaker. We’re just hoping for something better to come about. You never know.”
Meanwhile, Sejin’s a normal kid — almost.
“I think I’m doing pretty good for what I have,” he said. “I’m glad the Shriners helped me.”
Shrine tourney poster kids get helping hands
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