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Wisconsin to start testing for Krabbe disease
The state of Wisconsin will soon begin testing all newborns for Krabbe disease, an "ultra rare" and deadly neurological disorder.
MADISON, Wis. - The state of Wisconsin will soon begin testing all newborns for a deadly neurological disorder.
What is Krabbe disease?
The backstory:
Krabbe disease is a genetic disorder, considered "ultra rare," that only affects one in every 100,000 babies. But it is fatal unless treated within the first 30 days of a baby's life.
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FOX6 Investigators have been sharing the story of Collin Cushmann, who died of the disease in 2019. His parents have tried to get Krabbe disease testing approved since 2015.
Collin Cushmann and family
State screening program
What they're saying:
On Tuesday, Wisconsin Department of Health Services Secretary-designee Kirsten Johnson signed a letter that officially adds Krabbe disease to the state's screening program.
"I think that it's going to change a lot of people's lives, and it's going to be just great," said Kendra Cushmann, Collin's sister.
"It's a little bittersweet, because it's my last tie to the living Collin. You know, I always had that, those memories sitting with Collin at night telling him I wasn't going to quit until I saw this through," said Kevin Cushmman, Collin's father.
What's next:
Wisconsin's newborn screening program currently tests for 50 different disorders. Once the testing procedures are in place, Krabbe will become the 51st, and Wisconsin will become the 20th state to test newborns for the disease.
The Wisconsin DHS said Krabbe disease testing now enters the rule-making process, which could take up to two years before testing begins.
The Source: FOX6 Investigators produced this story.