Baylee Bragg

On February 16, 2010 I had a story air about a 2-year-old girl with a rare condition called OMS. It is a story I had been sitting on since December, when I first met and interviewed Baylee's parents. My producer wanted to hold it for sweeps, which I think in the end was the best idea. The piece aired in the 10pm show right after the Olympics and we had a huge rating.

The story with Baylee is one I hope no parent ever has to experience. When I met Britany and Harvey Bragg, they had just spend the last two weeks at the hospital going through just about every emotion known to man. Their beautiful daughter had gone from being completely normal, to losing all motor skills in about a day. Her eyes would dart back and forth, her arms and legs would shake, and she lost her ability to talk and walk. Doctors didn't know what was wrong with Baylee until she came to Primary Children's Medical Center. Once there they found the tumor that had caused the OMS. Now, after surgery, she is slowing getting better, though she will never fully recover.

Looking back on the interview I did, I remember walking into the family's house and Baylee immediately got scare of me and the photographer I was with. I was wearing a white coat, which we figured out must have scared her because for the past two weeks, doctors with white coats had been poking her, and doing tests on her in the hospital. After about an hour she warmed up, and sat on the floor with her dad and tired to play with the marbles. You could see just how hard it was for her. She was trapped in this body that wouldn't work. I will never forget Baylee or her parents. Over the last few months they have kept me updated on her progress, the medications she is taking, and now the on-going media attention that started with this story, and the determination from the Bragg family to get the word out about OMS.

Video Courtesy of KSL.com

February 16th, 2010 @ 10:45pm

By Shara Park

SALT LAKE CITY -- Imagine your child happy and healthy one day and then falling over, twitching uncontrollably and losing all ability to speak the next.

It happened to a couple from Idaho and their 2-year-old daughter. Doctors had no idea why, until they brought the little girl to Utah.

When Baylee Bragg was flown to Primary Children's Medical Center doctors from Idaho thought her symptoms might be the result of bleeding in her brain. But that wasn't the case. Once at the hospital she was diagnosed with a rare condition that affects as few as one in 1 million people each year.

Two months ago it was difficult for Baylee to do simple tasks, like holding a Popsicle and putting a marble into a hole. Her father, Harvey Bragg, said, "It's hard to hold her head up. It's hard to pick something up without shaking."

Harvey and Britany Bragg say their daughter's symptoms appeared overnight. "She was very physically active," Britany said. The next thing they knew, her eyes were darting back and forth, her hands and legs were shaking, and she began throwing violent temper tantrums. "She tried to strangle me. I was trying to calm her down, and she put her hand on my neck and just started screaming," Britany said.

Doctors first thought Baylee's symptoms were the result of an inner ear infection, but then as more tests were done, an MRI showed what looked like bleeding in her brain.She was immediately flown to Primary Children's Medical Center where they found something else. "The first doctor that walked in was a neurologist, I believe, and he said, ‘No, her symptoms don't match up with anything in the brain, but I've treated something like this three times before.' He said it's called OMS."

After 15 minutes of playing with Baylee in the hospital, the doctor confirmed his suspicions. It was Opsoclonus Myoclonus Syndrome, or OMS. It's an autoimmune disorder where the body attacks its own healthy brain cells. It's usually caused by an infection or a tumor called a neuroblastoma. Baylee had the tumor. "They said it was where her aorta branches off into the major arteries in her legs, right on her tail bone and into her spinal cord," Britany said.

In most cases it takes months to diagnose OMS. With every wrong diagnosis, the effects become more irreversible. In one week Baylee was diagnosed, had surgery to remove the tumor, and was on her way to recovery. It was nothing short of a miracle. "It just seems like things were just falling into place where we could get her treatment as fast as possible," Britany said.

Baylee is now back home, but her struggles are far from over. There are the monthly trips to Primary Children's for chemotherapy and daily injections of an extremely expensive hormone drug called ACTH. There is also relearning how to walk and talk, something she has already begun to do.

According to the National Pediatric Myoclonous Center Registry, Baylee is only the fifth child with OMS to be diagnosed in Utah. There may be more children out there, but because the syndrome is so rare, it is often misdiagnosed.

E-mail: spark@ksl.com