It's a disorder that was named less than 10 years ago and it only affects 600 to 700 people worldwide.
It's called Cyclin-Dependent Kinase-Like 5, or CDKL5. As rare as it is two Hoover families are dealing with it and putting a face on this incurable disorder.
What their doctors thought were seizures has been diagnosed as a seldom-seen affliction.
"One bad seizure could either cause her to regress or possibly take her life," said Amy Chandler.
Amy and Dustin Chandler are the parents of 2-year-old Carly. At just two months old Amy noticed something wasn't right with her daughter.
"I was at home alone holding her in my arms and she just had these weird movements that just didn't look normal for a child," she said.
The pediatrician said it looked like acid reflux but the Chandlers knew that something else was wrong. So Dustin waited for hours to record Carly having another episode. They took the footage back to the doctor and everything changed.
"She went through MRIs, she had to have a spinal tap. Numerous, numerous blood tests," said Amy.
After a year and multiple tests Carly was diagnosed with CDKL5.
"It's difficult knowing that your daughter won't be the cheerleader on the football field or in gymnastics or playing softball or doing whatever she wanted to do," said Dustin.
The Chandlers have joined groups that have families in the similar situation. Janet Wilson is one of them. Her 12-year-old daughter, Kayla was diagnosed last year and it was in part thanks to the Chandlers.
"A mutual friend of the Chandlers and ours had called me and said, 'Hey, have you heard about CDKL5?'"
Janet said Kayla can have anywhere from two to 10 seizures a day. She had one during her interview with FOX6. Janet says they don't last long but it's hard to watch.
There may not be a cure just yet but the support is what keeps these families going.
"We've always had hope that no matter what her diagnosis was that hopefully there would be a cure for her in her lifetime," said Amy.
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