INDIANAPOLIS — A mom and dad continue to fight to to make sure no other parent knows the pain of losing a child to Krabbe disease.
It's a rare genetic illness that took the life of Bryce Clausen shortly after his first birthday.
Now, his legacy lives on in a room that provides comfort to kids staying at Peyton Manning Children's Hospital. Bryce's Room - and a family's big love for their son - is Inspiring Indiana.
The theme room, filled with farm images, is in memory of Bryce. Created with community donations, his family finally got to see it in person after a pandemic delay.
"It was amazing how many little things they were able to incorporate that kind of told Bryce's story," said Andrea Clausen, Bryce's mom.
"I mean, obviously our last name's up there, but I mean, that's Senate Bill 41. And that's probably the most important thing we've ever done. And for them to incorporate it? It was just so cool," said Joel Clausen, Bryce's father.
Bryce died from Krabbe Disease, a rare genetic neurological disorder. But his parents fought to help other babies survive through newborn screenings. Bryce's Battle changed Indiana law. And that impact?
"To me, that's his legacy, because he's saving lives," Joel said.
He lives on here, on the walls, in the words. In a space to make sick kids feel a bit better. Colorful, not clinical.
"Because I'd stayed in this room with Bryce, I knew as a parent what I would have wanted," said Joel.
"That just takes their mind off of being here in the hospital. So it's pretty amazing how it transforms their minds," said Rachael Smock, nursing director at Peyton Manning Children's Hospital.
And it's personal. There's family photos, a plane from Bryce's bucket list. A birdhouse made by his grandparents. And Bryce's birthdate is on the barn.
"That's pictures from our farm," Joel said. "That's pictures from when we were doing things on Bryce's list. I mean, this is who we are!"
Three hundred kids have stayed in Bryce's Room so far, now a hospital favorite.
And for family, it's an extension of their son's legacy.
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