Huntsville family deals with rare, mystery syndrome - WAFF-TV: News, Weather and Sports for Huntsville, AL

Huntsville family deals with rare, mystery syndrome

Stunted growth is just one symptom of Cru Du Chat. Stunted growth is just one symptom of Cru Du Chat.
MADISON COUNTY, AL (WAFF) -

Cody Seiber has a genetic syndrome that makes him appear much younger than he is.

He said most people ask him if he is eight or nine, but he tells them he is 13. His syndrome has clear characteristics.

"That's why I'm so small," said Seiber.

There are other smaller characteristics as well.

"The other thing we noticed, right off, was his voice," said Mike Seiber, Cody's father. "The instant he was born, from the first time he cried it was definitely different."

His mom, Melissa, described it as a faint, kitten like cry. 

"The first inkling was probably when he was seven or eight months old," she said. "He should have been sitting up by then and he was having trouble with sitting up."

According to the Seibers, Cody did crawl and walk on time. As he grew, his voice stayed at a high pitch. Years later as health problems surfaced they took him to UAB.

"There was a crackling in his breathing that never went away," said Mike. "It was popping, crackling and we took him several times, cause it would almost sound."

The visits eventually led to genetic testing and the condition finally had a name, Cru Du Chat -- to the relief of his parents. That didn't happen until Cody was eight, but at least now there was a name for his condition.

While his parents did a lot of research on the Internet, much of the information was old, and his condition was not as severe as the cases on line, though, it did explain a lot: the short stature, high voice and struggles in school.

The main objective for this family and for Cody was to raise awareness of this syndrome.

"We feel like it's important to get it out there because the diagnosis, most people haven't heard of it," said Mike.

He said terms like "short life span" and more can lead parents of the newly diagnosed to the wrong conclusion. Each case is different. 

"A lot of the stuff you find on the Internet is stuff that was written in the early '70's," added Melissa.

Depending on the physical symptoms, they would like to see testing at birth.

Cody said his condition sometimes holds him back because of his small stature and growth, but he and his family are optimistic about the future.

Copyright 2011 WAFF. All rights reserved.

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