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INDIANAPOLIS (WTHR) – Bryce Clausen died Friday, but her legacy will last a lifetime.
In less than two years with us, Bryce has been able to inspire a change of law in Indiana that will save other children.
Bryce was diagnosed with Krabbe's disease when it was too late for treatment. It is a rare genetic neurological disorder.
"Bryce and I have spoken many times since his diagnosis, saying that when he was ready, everything would be fine for his father. "
The cost of the test that would have allowed him to quickly get some crucial help was less than the cost of a Big Mac, but was not part of the neonatal screening of Indiana.
Once you have symptoms of Krabbe, it is too late.
But with an early diagnosis, there is hope.
Bryce's parents have set themselves the mission and legacy of their son to spare this pain to other families and save lives.
The passionate laws of his parents inspired Indiana lawmakers and in a few weeks, the "Bryce Bill" became law.
This will ensure that all Hoosier babies will be tested for Krabbe and two other neurological diseases: Pompe syndrome and Hurler syndrome. They will be added to Indiana's neonatal screening panel in 2020, offering a potential pathway to life-saving treatment.
Bryce showed that even the smallest Hoosiers could make a difference.
A life of memories
Bryce's parents, Joel and Andrea Clausen, were also determined to ensure that their little boy had lasting memories before his illness took him.
They went to the opening game of the Colts, Pacers, Bengals and Reds. They played with him in the snow, made trips, enjoyed Halloween, Christmas lights, sitting on Santa's lap and even a simple swing at the park.
There is a saying that says "a flame burns very loud before it goes out" Bryce's flame was really bright. He had a lifetime of memories during his months on Earth. It has inspired countless other people, including our heads of state. He was loved by his mother, father, brother, and a whole family, including those of us here at Channel 13.
We can all consider ourselves lucky to have brought Bryce here in Indiana.
He and his parents showed us how to live, how to love not only for ourselves, but for others, and how to make each day count.
Bryce, the sky has another angel today.
Always make a difference
The Clausen family is asking for flowers to donate to Peyton Manning Children's Hospital.
It's an effort to raise $ 50,000 to decorate a theme room on behalf of Bryce. Up to now, $ 9,000 has been raised to achieve this goal.
If you would like more information about the room or to donate, click here.
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