INDIANAPOLIS (WTHR) — Bryce Clausen passed away Friday, but his legacy will last lifetimes.
In his less than two years with us, Bryce was able to inspire a change in Indiana law that will save other children.
Bryce was diagnosed with Krabbe Disease when it was too late for treatment. It is a rare, genetic neurological disorder.
The cost of the test that would have allowed him to get crucial help early on was less than the cost of a Big Mac, but wasn't part of Indiana's newborn screening.
Once you show symptoms for Krabbe, it's too late.
But with early diagnosis, there's hope.
Bryce's parents made it their mission and their son's legacy to spare other families from that pain and help save lives.
Passionate pleas from his parents inspired Indiana lawmakers and in a matter of weeks, "Bryce's Bill" became law.
It will make sure all Hoosier babies get tested for Krabbe and two other neurological diseases: Pompe and Hurler's Syndrome. They'll be added to Indiana's newborn screening panel in 2020, providing a potential path to life-saving treatment.
Bryce showed even the smallest Hoosiers can make a difference.
A lifetime of memories
Bryce's parents, Joel and Andrea Clausen, were also committed to making sure their little boy had a lifetime of memories before his disease took him.
They went to Colts games, Pacers, Bengals and the Reds home opener. They played with him out in the snow, took trips, enjoyed Halloween, Christmas lights, sitting on Santa's lap and even a simple swing at the park.
There's a saying that "a flame burns brightest before it goes out." Bryce's flame was truly bright. He had a lifetime of memories in his months on Earth. He inspired countless others including our heads of state. He was loved by his mother, his father and brother and an entire family including those of us here at Channel 13.
We can all count ourselves lucky for having had Bryce born here in Indiana.
He and his parents showed us how to live, how to love not just for ourselves but for others, and how to make every day matter.
Bryce, Heaven has another angel today.
Still making a difference
The Clausen family is asking in lieu of flowers to for donations to be made to Peyton Manning Children's Hospital.
It's an effort to raise $50,000 to decorate a theme room in Bryce's name. So far, $9,000 has been raised towards that goal.
If you would like more information on the room or to donate, click here.