Bryce's Law Signed By Indiana Governor, Will Save Lives

Wednesday, March 27, 2019 at 7:35 AM

By Mike Perleberg @mikedup84

An East Central High School graduate's dying one-year-old son has inspired Indiana lawmakers to pass a life-saving new law.

Gov. Eric Holcomb (seated, center) signs legislation co-sponsored by State Rep. Randy Lyness (R-West Harrison) (standing, fourth from right) adding Krabbe, a rare genetic disease that breaks down the nervous system, to Indiana’s newborn screening panel Monday, March 25, 2019, at the Statehouse. Holcomb and Lyness are joined by Joel and Andrea Clausen (seated) who advocated for the legislation after their son Bryce was diagnosed with Krabbe at 6 months old. Photo provided.

(Indianapolis, Ind.) - A one-year-old baby with southeastern Indiana ties has helped to get a new law passed.

Eagle Country 99.3 shared with you last week the story of little Bryce Clausen. The baby was diagnosed last year with Krabbe disease, which is a terminal genetic disorder affecting his nervous system.

He is the son of 2002 East Central High School graduate Andrea Claussen and her husband Joel. They live in Indianapolis, but Andrea, formerly Wolfram, has lots of family here in the tri-state.

The Clausens have been supporters of Bryce’s Law, which adds Krabbe disease, Pompe disease and Hurler syndrome to Indiana’s newborn screening panel.

Despite a late filing of the bill in this year’s legislative session, the bill passed through the Indiana Senate and House without a single vote against it.

Senate Enrolled Act 41, better known as Bryce’s Law, was signed into law on Monday by Governor Eric Holcomb. Bryce and his family were there for the ceremony.

Bryce was diagnosed late, so he is not expected to live past his second birthday, but the Clausens hope early detection thanks to Bryce’s Law will help save other lives by allowing them to get early treatments which have shown success.

Joel Clausen shared a thanks to many who helped pass Bryce’s Law on the #BrycesBattle Facebook group the day of the signing.

“Finally, to Bryce....you did it. Your mommy and daddy are so proud of you. I know you dont know it. I know you are fighting your own battle, but you just won a huge war. Today we celebrate 14 months of your life, today we celebrate your saving lives....forever,” he said.

State Rep. Randy Lyness (R-West Harrison) co-sponsored Bryce’s Law in the House of Representatives.

“Getting ahead of this deadly disease and detecting it early is crucial,” Lyness said. “Babies often do not show symptoms of Krabbe for several months and unfortunately, it is too late for treatment once symptoms appear. Early screening is currently the only way to alert the parents and provide the best treatment options for the child.”

The Clausens are continuing to cherish the precious little time they have left with Bryce before Krabbe disease takes him. The parents have a list of experiences they want their dying son to experience, including “making a difference in someone else’s life.”

They have chosen to accomplish that is by raising money to decorate a themed room at the Peyton Manning Children’s Hospital at St. Vincent in Indianapolis. You can donate online at St. Vincent Hospital’s website.

As of Tuesday, about $8,000 of the $50,000 goal has been raised.