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Bill Would Include Krabbe Disease For Newborn Screenings

By Jill Sheridan

Posted February 15, 2019

Health committee

The Senate Health and Provider Services Committee passed the bill unanimously. (Jill Sheridan/IPB News)

A proposal to include newborn screenings for a genetic disease called Krabbe is headed to the Indiana Senate.

The story of an Indianapolis baby named Bryce has given the bill momentum.

Bryce Clausen’s parents could tell something was wrong when Bryce was only a few months old. The diagnosis was Krabbe disease, a deadly genetic condition that attacks the nervous system.

Joel Clausen says if his son was born in one of Indiana’s neighboring states, his fate might be different.

“He would have been diagnosed at birth and had access to life saving treatment," Clausen says. "With Krabbe, by the time Bryce showed symptoms it was already too late.”  

Right now Indiana screens newborns for 47 other conditions, including cystic fibrosis and hearing loss.

Clausen says they wanted to bring the issue to lawmakers.

“I honestly believe that Bryce will die so that other babies in Indiana won’t have to," says Clausen. "This will be his legacy.”

Two other disease screenings would also be added to the list required by the state, if the bill passes.

The bill passed committee unanimously and heads to the full Senate.

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