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.
As few as 1 in 10,000,000 people are affected by OMS per year.
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."
OMS occurs in children at an average age of 19 months.
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.