Doctor works to keep rare condition from taking girl's smile

Knoxville doctor works to keep rare condition from taking Oak Ridge girl's smile

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Since the moment Jordan Henegar, 14 of Oak Ridge, was born, she’s been full of life, smiling her way through every day with her trademark grin plastered across her face. Since the moment Jordan Henegar, 14 of Oak Ridge, was born, she’s been full of life, smiling her way through every day with her trademark grin plastered across her face.
It came as a shock one recent morning when Jordan's mother was helping fix her hair before school, and looked down to see her daughter's face unrecognizable. It came as a shock one recent morning when Jordan's mother was helping fix her hair before school, and looked down to see her daughter's face unrecognizable.
Dr. Joe Peeden works in the Diagnostic Clinic at ETCH, which specializes in solving complex, difficult to diagnose cases. He immediately set to work, and with no time to waste. Dr. Joe Peeden works in the Diagnostic Clinic at ETCH, which specializes in solving complex, difficult to diagnose cases. He immediately set to work, and with no time to waste.
By HAYLEY HARMON
6 News Anchor/Reporter

KNOXVILLE (WATE) - Smiling is something we all do countless times a day, oftentimes without even thinking about it. But imagine knowing that you may never be able to smile again.

That was the dilemma one East Tennessee girl recently faced.

A rare medical condition left her at risk of losing her ability to smile, but because of a local doctor who would stop at nothing to find the answers, she’s smiling bigger than ever before.

Since the moment Jordan Henegar, 14 of Oak Ridge, was born, she’s been full of life, smiling her way through every day with her trademark grin plastered across her face.

"My goodness, it just lights up the room,” said Dr. Joe Peeden, Jordan’s pediatrician at East Tennessee Children’s Hospital.

That smile has never diminished through the years, even as she's been diagnosed with multiple serious illnesses.

Jordan has celiac disease, Hashimotos disease, a brain cyst and juvenile rheumatoid arthritis.

She’s never let her health conditions get her down.

That’s why it came as such a shock one recent morning when Jordan's mother was helping fix her hair before school, and looked down to see her daughter's face unrecognizable.

Her right jaw was sagging so severely, it was pulling her face down.

"I said, 'Jordan, what happened?' She said 'Oh, it happens all the time. My jaw just falls out of place,’” said Sheri Henegar, Jordan’s mom.

Sheri was speechless at what happened next: Jordan reached up and pushed her own jaw back into place.

"I learned to pop my jaw back into place because when I would try to eat, it would pop out, where it was so low on this side,” said Jordan.

Jordan tells 6 News the intense pain in her jaw had developed slowly, but got so bad, she could barely eat or even open her mouth.

She began self-restricting her diet to avoid having to open her mouth wide, cutting down her intake to things like mashed potatoes and soup, but it just kept getting worse.

Her sagging jaw left her unable to smile, and when she did, it was crooked.

"I did my pageants and I did my cheer, and it just wasn't good,” said Jordan.

She never said anything to her doctors or parents because she was used to dealing with the pain of her ailments. She thought it was nothing more than a “flare up.”

But the day she saw her daughter’s jaw fall out of place, Sheri immediately called Jordan’s longtime doctor, Dr. Joe Peeden at ETCH.

Dr. Peeden works in the Diagnostic Clinic at ETCH, which specializes in solving complex, difficult to diagnose cases. He immediately set to work, and with no time to waste.

"Pretty quickly it was getting worse and worse, her smile. I was calling Dr. Peeden saying, 'Today I've noticed that it's gotten worse,’” said Sheri.

Having known the girl with the infectious grin her entire life, Dr. Peeden says he couldn’t let her lose that.

"I was crying, and he said, 'Don't worry, mom. We're not going to let her lose her smile,’” said Sheri.

Dr. Peeden discovered that Jordan’s juvenile rheumatoid arthritis was causing the joint in her jaw to deteriorate.

He says it’s an extremely rare manifestation of the disease. He’s been practicing since 1975 and Jordan’s case is only the second one he’s ever seen.

"I'd never even thought about it happening to her. I'd never even thought about her face being affected by arthritis,” said Sheri.

Now that they figured out the problem, fixing it was another story. Because the condition is so rare, Dr. Peeden says there is no treatment in East Tennessee.

After researching for months, Dr. Peeden found a specialist at Cincinnati Children’s Hospital who told him about a treatment, still in the trial phase, that might work.

Jordan’s family decided to go for it. She received the experimental steroid injection in her jaw.

"They say it's more intense than brain surgery because they have to hit a one millimeter point,” said Jordan.

Within one week, Jordan could move again.

"Sure enough, he was able to really give her back her smile,” said Sheri.

Jordan has had the injection twice now, and her facial movement continues to get better every day. That’s something Jordan, and her appetite, are beyond excited about.

"It was better when I could start eating my steak again. Not going to lie, I love steak,” said Jordan.

Without the treatment, and Dr. Peeden’s tireless efforts to find it, Jordan’s face would have only gotten worse.

"I don't even want to think about it. She wouldn't be the smiling, happy Jordan she is now,” said Dr. Peeden.

"Sometimes I can't even close my mouth. Permanent smile,” said Jordan.

"Making a child better. That's where it's at. That's the reward,” said Dr. Peeden.

The Diagnostic Clinic has only been open for about a year and a half at East Tennessee Children’s Hospital. They work endlessly to solve complex cases, referred by other doctors. For more information, visit ETCH’s website.
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