Camdenton Boy Shares Story of Living with Brittle Bone Disease

3 years 7 months 3 weeks ago May 31, 2013 May 31, 2013 Friday, May 31 2013 Friday, May 31, 2013 2:58:00 PM CDT in News
By: Maddie Heidenreich
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CAMDENTON - Noah Leiferman grins from ear to ear as he sits on his NASCAR-themed bedspread.

"He is very five and very much a boy."

That's how Randi Phillips describes her son. Little Noah acts like any 5-year-old. He loves NASCAR, golfing and showing off his new pet lizard, Zig-Zag.

"He's (Zig-Zag) a fast little guy," said Noah.

But then it was time to be serious.

"My legs slammed on the ground but I didn't break it," said Noah. "So then I slipped on forward and this arm bent in and just broke."

Noah was born with brittle bone disease, but says he is "just used to it."

"At the clinic we call it O.I. and it is a connective tissue disorder that is a genetic mutation that can be passed down by a parent or it can occur spontaneously and it's characterized by brittle bones or fragile bones," said nurse practitioner, Kelly Scott.

Brittle bone disease, or Osteogenesis imperfecta, is inherited from parents in about 50 percent of the cases. Noah is the 5th generation in his family to be born with the condition. He has broken more than 10 bones, not counting toes and fingers. Noah has had more than one hundred x-rays.

"The crying went on for a few minutes and then we decided to take him to the hospital and it was a spiral fracture,"said father Derek Leiferman. "The doctors thought that it was child abuse. That we had taken his leg and broke it somehow."

Scott said this often happens. 

"That can be a common occurrence when you do have a child with multiple fractures and then wonder what is going on, but also keep that differential of O.I. in your mind," said Scott.

The optimistic attitude runs in the family.

"It hurts you when you can't fix them and I want him to experience everything that there is to offer, but I just want him to be super safe," said mother Randi Phillips.

The family is hosting a 5K fundraiser to find a cure for O.I. at the First Baptist Church in Camdenton at 6:30 tonight. If severe weather hits, the 5K will move to the gymnasium.

 

 

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