Mississippi Boy Commutes To Chicago For Treatment

(CBS) – At just 10 years old, Levi Krystosek has flown tens of thousands of miles, but his airline flights aren't for fun. They're to prolong his life.

CBS 2's Dana Kozlov reports.

Levi is leading the way through Lurie Childrens Hospital. The fact the 10-year-old's giving a walking tour is actually a big deal.

"I act like a normal kid, but on the inside, I'm not a normal kid," he says.

He speaks openly about his condition, called Jansen's Syndrome. It's so rare, he's one of only about 24 cases in the world.  Simply put, "It causes the bones to be very, very bad," Levi explains.

That causes a type of debilitating dwarfism.

Levi sees Dr. Craig Langman, considered a top expert on the disorder.

To see him, Levi has to fly to Chicago from his Mississippi home. Early on, he flew every eight weeks.

"We depleted our savings account," Levi's mother, Dona, says. "We maxed out our credit cards."

Then she found Miracle Flights, which, if patients qualify, flies them for free to their appointments. It's been life-altering.

"Levi would be in a wheelchair. Levi wouldn't be walking around," she says.

Levi's parents found Dr. Langman after someone saw their story online and referred them to him when he was 18 months old.

"Here's a young man who is growing, to the extent that he can. I still can't reverse genetics, but I can keep him out of a wheelchair," Langman says. "He goes to school. He's has the best sense of humor. It's just why I'm in the business."

For more information about Levi, click here.