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.