Omaha to host fundraiser for rare medical disorder

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OMAHA, Neb. (WOWT) - An Elkhorn mother said she spent most of her childhood in a hospital. She's doing everything she can to make sure her two boys, with the same condition, don't end up that way.

Omaha will host a fundraiser of ultra-rare proportions this weekend, all to benefit a handful of inspiring individuals.

Cade Hughes lives in Florida. He's never been on an airplane before, but the weekend the 7-year-old is headed to Omaha.

Cade has what's called Jansen's for short. It means he loses bone faster than it grows. He is just one of six kids in the U.S. with the disorder.

"We're so excited for him to meet other kids like him, because I think it makes him feel good and that he's not alone," said Stephanie Hughes, Cade's mother.

Arshaan and Johan of Elkhorn also live with the debilitating skeletal condition.

They're getting together for the Second Annual Jansen's Foundation Walk-a-thon at Lake Zorinsky Park.

Superheroes were all over for the first one last year, and just as many capes are expected Saturday morning.

The walk-a-thon is about awareness, and looking for new pathways for treatment or even a cure.

With so few people who have the condition - less than 30 worldwide - it's hard to get drug-makers to take the risk. There's not enough profit.

That's why the parents are leaning on others, even strangers, to build a patient organization to push towards a common goal.

"This is going to be the best few days ever," said Arshaan.

Therapeutic treatment is expected to get FDA approval next month, and there's even a Skeletal Conference planned with some of the brightest minds in the field coming to Omaha in Sept.

Registration for the walk-a-thon begins at 9 a.m. and the walk starts at 9:30. Use the Lake Zorinsky entrance by the water park and follow the road to Shelter Four.

Superhero attire is optional.