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.”
Mia Barnes doesn’t say much about how the Shriners have helped her. Instead, she’s shy and clings to her mother, Sarah.
Back in March 2011, Mia — and Sarah — knew nothing but fear.
Mia had pulled a bar stool to the stove, climbed it and grabbed a pan of boiling hot water down, pulling it down on her left arm. She suffered third and fifth degree burns from her shoulder to her wrist. The youngest of three girls was not quite 2 at the time.
“Mia got real quiet and I figured she was going into shock,” Matthew Barnes, also a volunteer fireman in Gore, said. “She had quit crying and was trying to doze. I wanted to make sure she stayed awake.”
Meanwhile, Sarah said she was scared.
“I was upset at myself,” she said. “It just happened so quickly that I couldn’t have stopped it.”
The Barnes rushed their daughter to Muskogee Regional Medical Center. While en route, they called their pastor, who said a prayer through the phone.
The doctors at MRMC told the family they couldn’t handle the burn and they were going to send Mia to Hillcrest Hospital in Tulsa.
But, while Mia was still in the MRMC emergency room, Shriners Jim Ritchey and Greg Schuler appeared and offered their help. They loaded Mia and Sarah in an ambulance with Matthew in a car behind them and drove at 75 mph the nine hours to Galveston, Texas.
“We were going through Houston and I had prayed for the 180th time when I look through this small window on the ambulance and see a cross lit up on this building,” Sarah said. “I know then God played a big part in a part of helping us.”
Once arriving in Galveston, skin grafts from the back of Mia’s head were applied to her arm. She wears a protective sleeve and she’ll show off her how much she’s healed. The Shriners also take her and her parents to Galveston for follow-up appointments every three months.
“Mia’s a Shrine kid until she turns 18,” Matthew said. “If she gets burned again or needs another skin graft, the Shriners will help her with no questions asked.”
Sarah has since written an emotional testimonial to the Shriners to thank them.
“I love them to pieces,” Sarah said. “We couldn’t have done it without them. There aren’t enough words to say thank you.”
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