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'He moved mountains:' Baby with rare disease inspires life-saving law before he dies

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'He moved mountains:' Baby with rare disease inspires life-saving law before he dies

Bryce Harlan Clausen never walked or crawled. But in his all-too-brief life, he accomplished something many never do: 'He made a law!'

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

But in the all-too-brief 14 months of his life, the tow-headed infant accomplished something that must people never do: He inspired the passage of a bill to give others born with the disease that afflicted him a better shot at life.

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

But just weeks before he died, Bryce lay in the arms of his mother, Andrea, as Gov. Eric Holcomb signed into law a bill bearing his name that requires all infants born in Indiana be screened for Krabbe disease, the malady that affected Bryce, as well as other terminal illnesses.

"I could spend all day talking about the impact he had on this world, but it doesn't even hold a candle to the impact he had on my life, my wife, and our families," Joel wrote on Facebook. "He was the bravest, toughest, most inspiring human I have ever met, and I am lucky to call him my son. His legacy is far greater than I could have ever imagined."

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Not all states screen for Krabbe disease

Only 10 other states have added Krabbe to the list of mandatory newborn screenings, among them two of Indiana's neighbors, Illinois and Ohio.

With the passage of Bryce's law, Indiana now screens for 52 conditions, 5 of them added to the roster this year and last.

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

Had Bryce been screened at birth for Krabbe disease, his family could have sought a stem cell transplant that might have slowed or arrested the disease progress. Once the symptoms of the disease manifest themselves, it is too late for this therapy to have much of an effect, doctors say.

'He moved mountains'

For the first few months of his life, Bryce's parents had no inkling anything was amiss. At about four months of age, though, he stopped progressing and his condition continued to deteriorate as he missed milestone after milestone. His parents spent months looking for answers until Bryce was diagnosed last fall.

By then, it was too late for Bryce. At the time of diagnosis, the doctor warned his parents he would likely die before his second birthday.

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

To get little kids to be quiet, lower your voice instead of raising it. This forces kids to focus. Got a whole pack to corral? Whisper, "If you want to hear what we're doing next, hop on one foot." Goofy jumping is bound to be contagious.

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

"Today my wife and I have shed more tears than we ever have, but we want the world to know how proud of Bryce we truly are. He moved mountains. He made a law!" Joel posted on Facebook. "He will save lives someday and what greater gift in life is that?"

The family asked that in lieu of flowers, people donate to St. Vincent to create a themed room at Peyton Manning Children Hospital in memory of Bryce.

Contact IndyStar reporter Shari Rudavsky at 317-444-6354 or shari.rudavsky@indystar.com. Follow her on Facebook and on Twitter: @srudavsky.

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