Hope for Elkhorn boys with rare disease

By  | 

OMAHA, Neb. (WOWT) -- A Nebraska family will head to California this Thanksgiving with the hope of helping find a cure to their ultra rare disease.

There are only 22-people in the world with it, and three of them live under the same roof in Elkhorn.

When we arrived at their apartment, the two boys were drawing and coloring in the living room. The designs focused on super heroes. It wasn’t long before Arshaan, who is 8, and his younger brother Jahan, 6, ran to their room to change into super hero costumes.

It’s hard to know they are struggling – until you see them walk.

“After sending x-rays across the world, no one could tell me what was wrong me with or my kids,” said the mother of the boys, Neena Nizar, who has the same condition. “I lived with the wrong diagnosis for almost 32 years.”

After years of uncertainty, last March a doctor in Boston finally understood what they have after running tests on their blood.

It’s called Jansen Metaphyseal Chondrodysplasia. It means they’re losing bone faster than it’s growing.

Arshaan told WOWT 6 News, the bone disease limits what he can do in school. "Not getting to do what normal kids do." Reporter: "Like what?" Arshaan: "Like play basketball, or Fire and Ice which I always miss out on in P.E. So that stinks."

Next week, the boys travel to UCLA.

While Jahan took a snack break with an Oreo, big brother Arshaan explained what will happen there.

"We take the Tetracycline –and it stains our bones and then after that we go to UCLA for a bone biopsy, and the doctors take out part of our bone and then they use that for a little experiment to see if the cure actually works on our bones."

Up to now – the treatment has been stop-gap surgeries.

“You can see where the knees are turning outward,” said their mother. “The same things are happening to Jahan's legs. The doctors in Boston are hopeful that a cure for Jansen’s would be a cure for other conditions and possibly a cure for osteoporosis."

"And if it does,” said Arshaan. “Everyone in the world with Jansen's can get cured. If it doesn’t, then – mmm."

Even so, Arshaan and Jahan think perhaps this is their superhero moment.

"We see ourselves now as an instrument to push this forward…and to give hope to others,” said their mother. “If you have a rare disease, it’s not the end of the story."

The Adam Boys leave for California this weekend. You can follow along on their journey on Facebook.