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14-month-old Who Inspired Newborn Screening Law Dies

Bryce Clausen

Gov. Holcomb signed a bill inspired by Bryce in March. (Jill Sheridan, IPB news)

A 14-month-old Indianapolis boy who inspired legislators to pass a bill adding Krabbe and two other diseases to the state's list of medical screenings for newborns died Friday. 

Bryce Clausen's parents didn't learn he had Krabbe until a few months after he was born. The deadly genetic condition attacks the nervous system. But, it can be treated with an early stem cell transplant. 

In a post on Facebook, Bryce's father Joel says his son died in his sleep in Florida. The family was vacationing there as they tried to complete several "Greatest Hits" goals for Bryce.

"I like to think that he wanted to wait until he got the bill signed, and he wanted to go to Heaven while feeling the sun on his face here in Florida, while knocking off one last item on his list," Joel wrote. 

Gov. Holcomb signed a bill March 25 with Bryce and his parents by his side that will ensure other babies are tested for Krabbe. 

"He will save lives someday and what greater gift is that?" Joel wrote. 

Want to contact your legislators about an issue that matters to you? Find out how to contact your senators and member of Congress here.

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