This is an archived article and the information in the article may be outdated. Please look at the time stamp on the story to see when it was last updated.

DES MOINES, Iowa – You’d never guess it now, but for years Lexie Blonigan did everything she could to hide her teeth. “When I was little I didn’t want to smile, “she says, “I didn’t want to show people how ugly my smile was.”

She suffers from a rare disorder called amelogenesis imperfecta, or AI. She was diagnosed when she was just two years old. Our Channel 13 crews met Lexie and her family because their insurance company refused to cover treatment. “Everybody’s in it for the almighty dollar,” Lexie’s mom told us back then. “They’re not interested in taking care of the patients’ needs!”

Tori Blonigan fought the insurance company, and won. “I wasn’t going to take ‘no’ for an answer because I knew my daughter needed this to live an everyday, normal life.”

Fifteen years and countless surgeries and procedures later, the Blonigans are still fighting the system.  AI doesn’t just make a person’s teeth look bad, it’s also very painful. Enamel doesn’t form and teeth disintegrate, exposing nerves.  Coming in contact with anything that’s too hot or too cold or too crunchy can be excruciating.

“That’s probably the most painful thing,” said Rich Blonigan. “As a parent you want to protect and control the things that are uncomfortable for your children.”

The procedures doctors did on Lexie when she was a toddler, and again six years ago, were temporary fixes.  “We’re on the last phase of the hurdle in Lexie’s life. Doctors have had to wait for her gums to mature so they could do a complete mouth reconstruction.”

In February, the Blonigans heard from their insurance company.  It was denying coverage. They questioned the decision and it was reversed, but now they’ve encountered a new problem.

“The challenge at this point is we can’t seem to get a periodontist that is willing to work with us on the insurance end,” Tori explains. She says the three offices they’ve contacted are requiring payment up front, ranging from five to ten thousand dollars.

They’re hoping someone in the Des Moines area agrees to help, so Lexie can get on with life.

Watch our story from 2009: