OMAHA, Neb. (WOWT) -- Never before has there been a walkathon for this specific ultra-rare disease until this weekend. Of the 22 people in the world with the condition, five of them will be in Omaha.
A long flight from Mississippi to Omaha did nothing to drain the energy of 11-year-old Levi. He’s excited to see two other members of his small, but dedicated club of self-described super heroes.
Brothers Arshaan and Jahan are from Elkhorn. The three boys all have what's called Jansen Metaphyseal Chondrodysplasia — they’re losing bone faster than it can grow.
"The only three genetically confirmed children in America together for the weekend," said Levi's mom, Dona Krystosek.
Waiting patiently for the arrival of his friends at Eppley Airfield, Levi tucks behind a corner next to the main entrance and urges everyone to please keep quite – and don’t ruin the surprise.
"Your buddies are just pulling up," said Neena, Arshaan and Jahan’s mother.
Arshaan and Jahan stroll into Eppley with their capes on. Levi is ready.
"Boooooo. Ha, ha, ha. That's how we start the party! You didn't see it coming. Good to see you," Levi says with a hug for each brother.
"The boys have always met for medical appointments, but never just to hang out and have fun," said Neena.
"This is their 4th time seeing each other. They pick up right where they left off. You'd think they grew up together," said Krystosek.
Jansen’s creates all sorts of medical problems. Krystosek said, "There are so many things they cannot do. They can't play contact sports. Levi can't jump on trampolines.”
The three boys will highlight the first ever Jansen's Foundation Walkathon this weekend.
"It's such a rare disease affecting so few people, but no one has turned us down. They've all embraced our mission and goal of finding a cure for these children," said Neena. "It's like a love sandwich."
"I think it shows the kids that if you try to do something – anything is possible," said Krystosek.
If you'd like to take part, the Jansen's Walkathon is Saturday morning at Lake Zorinsky Park, find more information here.