Louisville family heads to Washington to lobby for hospital dollars

By Lori Lyle - bio | email

LOUISVILLE, KY (WAVE) - Families across the country are in Washington this week hoping to make an impact for hospitals that specialize in pediatric care. They're there to fight for funding and a Louisville family is among those sharing their story with lawmakers. Thanks to pediatric specialty care at Kosair Children's Hospital, the Davises are enjoying an amazingly "ordinary" life.

In the backyard of their southend Louisville home, 9-year-old Madeline and 7-year-old Camille are tough to keep up with as they swing and run from one toy to the next. It's typical summer fun for any typical child, but typical for these two only started two years ago.

Before that, explains Madeline, "I couldn't ride my bike and I really wanted to do that, I couldn't hula hoop, I couldn't jump rope."

And when Madeline was two, she couldn't potty train either. Her mom, Lori Davis, remembers the frustration and the fear.

"She would go to the bathroom about 40 times a day," Lori said.

So from bowel and bladder problems, to muscle pains and problems with coordination they took their concerns to the pediatrician where Lori says they were met with advice that wasn't always helpful.

"'Oh, she'll [Madeline] grow out of it - it's nothing to be concerned about,'" Lori recalled being told.

But in fact, the "growing" was the problem. Through five years and five specialists, the Davises finally found Pediatric Neurosurgeon Thomas Moriarty at Kosair Children's Hospital. Dr. Moriarty has diagnosed the problem numerous times before but says it's not uncommon to go undiagnosed, even misdiagnosed.

"In fact, I've had quite a few kids who've been diagnosed with a mild cerebral palsy," Moriarty said.

Instead, the correct diagnosis for children like Madeline is a genetic disorder called Tethered Cord Syndrome. It's a problem in the lower part of the spine, similar to Spina Bifida, only at birth everything seems normal. Then as the child grows, the spinal cord doesn't stretch.

Lori and Madeline's dad, Kevin, say it was the specialty care at Kosair that finally found the problem. An MRI had been performed on Madeline, but the radiologist didn't see what Dr. Moriarty did. And he made the same diagnosis in Camille.

"The longer it takes for your diagnosis, the less likely you're going to fix everything," Moriarty said. "The girls are fortunate."

After a simple surgery to repair the spinal cord the results are amazing.

"As soon as she had the surgery she picked up riding a bike immediately," Lori said.

Little sister Camille is able to walk flat footed and has a lot more stamina. Today, instead of a long list of what they can't do, they can instead bounce around their backyard showing everything that they can do.

"They're normal kids," Lori said. "Anything is possible."

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