Indy Family Succeeding In Passing "Bryce's Bill" To Expand Newborn Health Screenings

Bryce Clausen, infant son of East Central High School graduate Andrea (Wolfram) Clausen and her husband Joel, is the littlest Hoosier making the biggest difference.

One-year-old Bryce Clausen (bottom) with his mother Andrea, father Joel, and big brother Levi. Bryce received a terminal diagnosis with Krabbe disease last November and has been given less than another year to live. Photo provided.

(Indianapolis, Ind.) – When Bryce Clausen was born in January 2018, his parents Joel and Andrea had no reason to suspect their second child was anything but healthy.

Bryce was hitting the usual milestones an infant reaches in becoming a toddler. He was rolling over, sitting up, and speaking.

But then the Indianapolis couple noticed Bryce’s development seemed to slow. Then he began to regress in addition to becoming irritable. They consulted their pediatrician, but all the usual ailments were ruled out over the next three months.

A blood test led to the discovery of what was wrong. Bryce was diagnosed last November with the terminal neurological condition Krabbe disease.

“It was a gut-punch,” says Andrea Clausen, formerly Wolfram, a 2002 East Central High School graduate with plenty of family still in the tri-state. “My husband and I walked out of the doctor’s office that day not knowing what to do and how much time we had left with him.”

Krabbe disease is a genetic disorder causing a lack of the enzyme galactosylceramidase in the body’s nervous system, according to the U.S. National Library of Medicine. The enzyme breaks down certain fats on nerve cells – a doctor told the Clausens that it’s like a garbage truck keeping the nervous system clean. Without the enzyme, a person’s nervous system begins to fail with symptoms such as weakening muscles, vision loss, and seizures.

“Basically, he is just regressing back to a newborn. He can’t smile anymore. He’ll never talk again. Can’t talk. Can’t walk. Can’t move,” Bryce’s mother explains.

Like most babies diagnosed with Krabbe disease, Bryce is not expected to live past two-years-old.

There is no cure for Krabbe disease. However, some treatments have had success if the disorder can be diagnosed through a blood test before symptoms show.

Finding that out, Joel and Andrea took up an important cause in Bryce’s name. They are now pushing for a change in Indiana law to expand newborn health screenings to include a check of Krabbe disease, as well as Pompe disease and Hurler syndrome.

“We can’t help Bryce, so we want to help other families not have to go through what we’ve gone through. If we can save one baby by adding Krabbe disease to the newborn screening, that’s all worth it to us in that Bryce has a legacy and his life meant something,” Andrea shares.

Lawmakers have seen the importance of Senate Bill 41, which is being called Bryce’s Bill. It unanimously passed the Indiana Senate in February. On Tuesday, the Clausens were in the room as the Indiana House of Representatives voted 96-0 to pass the legislation.

“He hasn’t had a vote against him yet. We are hoping he can go undefeated,” says Andrea, a native of West Harrison.

Only one more vote matters now as the bill heads to the desk of Indiana Governor Eric Holcomb for signature into law.

“It is amazing how fast everything has gone. We weren’t expecting anything to happen this legislative session because we started this so late in the session. Thankfully, Representative (Doug) Gutwein jumped on it and he said we need to do this now,” Andrea says.

If Bryce’s Bill becomes Bryce’s Law, Indiana would be the 11th state to require hospitals conduct a Krabbe disease screening for newborns. The law would go into effect on July 1, 2020.

“No family should ever have to go through what the Clausens are going through,” Gutwein (R-Francesville) said Tuesday. “Adding Krabbe to the newborn screening panel will not eliminate the disease, but it will give babies born with it and their families a chance to fight it.”

State Rep. Doug Gutwein (left) with Joel and Bryce Clausen after Bryce's Bill passed the Indiana House of Representatives on Tuesday, March 19. Photo by Indiana House Republican Caucus.

While supporting Bryce’s Bill at the Indiana Statehouse, the parents and older brother Levi have been racing against time to check off life experiences for Bryce before his time comes.

Some items on the “Bryce’s Greatest Hits List,” as Andrea calls it, include big events like Indianapolis Colts, Cincinnati Bengals, and Indiana Pacers games. They have plans to attend the Cincinnati Reds’ 2019 Opening Day game on March 28.

The one-year-old recently became a member of the Indiana Family Career and Community Leaders of America. Andrea was a member of East Central High School’s strong FCCLA organization, including being elected the Indiana FCCLA state President, when she was a student there.

Other moments they have made a point of sharing with Bryce are simpler: finger painting, playing in the snow, getting a haircut, visiting a petting zoo set up just for him by local 4-H members. The parents expect to take Bryce to visit a warm, sunny beach soon.

“All those things that you think you would want to experience as a family, we’re trying to cram it all in and get as much done as possible.”

At the top of Bryce’s list is “making a difference in someone else’s life.” To do that, the Clausens have started a fundraiser 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.

You can follow the Clausen family’s story on the #BrycesBattle Facebook group.