MADISON, Wis. (WAOW) — Senator Pat Testin, along with two other representatives, are introducing a bill to add Krabbe disease to the state’s newborn screening program.
Krabbe disease, formally known as globoid cell leukodystrophy, is a rare disorder that impacts the central and peripheral nervous systems. It has no cure.
But, according to Testin, early screening opens the door for parents to seek treatment and can enable the children to live longer and fuller lives.
“Scientific advancements and new treatments have brought hope to families of children with Krabbe, but early detection is key,” said Senator Testin. “By adding Krabbe to our newborn screening program, we give these kids a fighting a chance.”
The bill is called “Collin Cushman’s Law,” named after the baby a Wisconsin Rapids family lost to the disease in January of 2019.
“When it comes to your child you never want to hear ‘rare and terminal illness,’ but that’s what we heard when we got the diagnosis for our son, Collin,” said Kevin Cushman. “The only thing we could do was make him comfortable and watch him regress. We want to bring hope to families before it’s too late for their child. Newborn screening is the one way to save a child born with Krabbe when parents aren’t aware they are carriers of the disease.”
View the proposed bill below: