UPDATE (April 5, 2019)– Bryce Clausen passed away this morning, according to his father.
INDIANAPOLIS, Ind. — Governor Eric Holcomb signed the first bill of the 2019 legislative session into law today.
The bill signed was Senate Bill 41, which mandates that starting July 1 of 2020, all newborns must be examined for the detection of Krabbe disease, Pompe disease and Hurler syndrome. All three diseases stem from rare genetic conditions.
Support for the bill gained momentum with the help of the Clausen family, who spoke to the committee before a vote was held. Their son, Bryce, was diagnosed with Krabbe disease months after his symptoms appeared. Had the condition been caught earlier, doctors could have attempted a medical procedure that could potentially stave off the disease. Instead, doctors say Krabbe disease will likely take Bryce’s life before he turns 2 years old.
The Clausens and Governor Holcomb hope the new law will help save Hoosier lives in the future.
The Governor posted a Tweet regarding the bill Monday afternoon.