Death of Indiana legislation at the age of 14 months

TO CLOSE

The Battle of Bryce: Parents fight for a change of law after Krabbe's diagnosis of his son.
Matt Kryger, IndyStar

Bryce Harlan Clausen has never walked or crawled. Never spoke a word. Barely smiled.

But in the very brief 14 months of her life, the tug-headed infant has accomplished something that no one should do: it inspired the passing of a bill to give people born with the disease that afflicts a better blow to life.

Bryce died Friday, finally succumbing to the rare disease with which he was born. He died while he was on a family vacation in Florida, said his father, Joel, on Facebook.

Just weeks before his death, Bryce was in the arms of his mother, Andrea, while Governor Eric Holcomb had signed a bill bearing his name, demanding that all children born in Indiana be screened Krabbe's disease, Bryce's disease, as well as other terminal illnesses.

"I could spend the whole day talking about the impact he's had on this world, but that does not even stand up to the impact he's had on my life, my life." wife and our families, "wrote Joel on Facebook. "He was the most courageous, hardest and most inspiring man I've ever met, and I have the chance to call him my son." His legacy is far more great that I could not have imagined. "

Only 10 other states have added Krabbe to the list of mandatory neonatal screening, including two of Indiana's neighbors, Illinois and Ohio.

With the adoption of Bryce's law, Indiana now filters 52 conditions, including 5 added to the list this year and this one.

Holcomb tweeted Friday afternoon about Bryce's death, saying the infant had left "a great legacy".

If Bryce had been diagnosed at birth for Krabbe's disease, her family could have requested a stem cell transplant that could have slowed or halted the progression of the disease. Once the symptoms of the disease have manifested, it is too late for this therapy to have a significant effect, the doctors said.

During the first months of his life, Bryce's parents had no idea what was going on. At about four months, however, he stopped progressing and his condition continued to deteriorate, he missed one step after the other. His parents spent months searching for answers until Bryce was diagnosed last fall.

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Indiana Governor Eric Holcomb signs the first bill in his office on Monday, March 25, 2019 at Indiana State House. Indiana Senate Bill 41, commencing July 1, 2020, providing for the screening of Krabbe's disease, Pompe disease and Hurler syndrome in newborns. Governor Holcomb looks at Bryce Clausen, son of Joel and Andrea Clausen, before signing the bill. (Photo: Matt Kryger / IndyStar)

At that moment, it was too late for Bryce. At the time of diagnosis, the doctor warned his parents that he would probably die before his second birthday.

His parents could not save their son but they hoped to save his fate for others. They successfully campaigned for the bill that was passed by both chambers of the Indiana General Assembly without a single dissenting vote.

At the time of his death, his family was vacationing in Florida, where they had been vacationing "Greatest Hit," his father wrote.

"Today, my wife and I shed more tears than ever before, but we want the whole world to know how proud we are of Bryce, He moved mountains, He made a law!" Joel posted on Facebook. "Will he save lives one day and what better gift does he have in life?"

The family asked that instead of flowers, people Donate to St. Vincent to create a thematic room at Peyton Manning Children's Hospital in memory of Bryce.

Contact Shari Rudavsky, IndyStar reporter, at 317 444-6354 or [email protected]. Follow her on Facebook and on Twitter: @sudavsky.

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