Little Bryce Dies Days After Inspiring Expanded Indiana Newborn Screening Law

Bryce Clausen has many loving family members here in Eagle Country.

One-year-old Bryce Clausen (bottom) with his mother Andrea, father Joel, and big brother Levi. Bryce did on Friday, April 5 after receiving a terminal diagnosis of Krabbe disease. Photo provided.

(Indianapolis, Ind.) - A one-year-old boy who inspired a new life-saving law in Indiana has died

Bryce Clausen died on Friday from the effects of the neurological disorder Krabbe disease. He was in Florida with his family, who took him there hoping to cross a trip to the beach off his “Greatest Hits” list of life experiences before the disease took his life.

He was the son of Joel and Andrea (Wolfram) Clausen, of Indianapolis. Andrea is a West Harrison native and 2002 graduate of East Central High School.

Little Bryce helped to inspire Indiana lawmakers and the governor to pass a law just days before he died. Bryce's Law adds Krabbe disease to the list of conditions newborn babies in Indiana are screened for.

Early detection of the disorder provides time for treatments which have been shown to be successful. Krabbe disease takes the lives of most afflicted babies before their second birthday.

“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 told Eagle Country 99.3 last month.

Bryce’s Law also adds Pompe disease and Hurler’s Syndrome to the panel of Indiana’s newborn screenings in 2020.

Bryce Clausen’s parents are asking that memorial donations be made to redecorate a patient room at Peyton Manning Children’s Hospital at St. Vincent in Indianapolis. You can donate online at St. Vincent Hospital’s website.

His father, Joel, shared the news of Bryce's death on the #BrycesBattle Facebook group:

This morning, in his sleep, Bryce Harlan Clausen passed away. We are in Florida currently, where we were trying to knock off a few more Greatest Hits items. As the brochure says, Bryce was just "a few flip flops" from the beach when he passed away in our room, peacefully. 
Bryce and I talked numerous times since his diagnosis that when he was ready, that it would be ok with his dad. That when he was done fighting, it would be ok. When he wanted to go, that he had loved ones in Heaven that were excited to meet him. I like to think that he wanted to wait until he got his bill signed, and he wanted to go to Heaven while feeling the sun on his face here in Florida, while knocking off one last item on his list. 
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. 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. 
We are still trying to process the loss of our son and on top of that, we are trying to figure out how to get home and how Bryce will get home. 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! We are so sad for our loss, but we are so happy that Bryce is in Heaven with some of our loved ones who have passed on before and he is no longer in pain. Krabbe is a terrible disease and Bryce helped to bring awareness to the need for newborn screening in Indiana, and he accomplished that goal in a big way. He will save lives someday and what greater gift in life is that?
Bryce Harlan Clausen.... we love you.

(In lieu of flowers please think of donating to the room at Peyton Manning Childrens Hospital... https://give.stvincent.org/clausen-family-project )

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