Sen. Julie Lassa
Proposed legislation could save the lives of Wisconsin children. Wrenching experiences were shared at the Capitol on Wednesday. With his wife Jenna at his side, Kyle Heckendorf of Mosinee recounted the story of Bryce, their son who died of Krabbe Leukodystrophy disease at just 18 months of age.
“Had we known about Bryce’s diagnosis prior to the unset of symptoms, he could have received a potential life-saving treatment,” Heckendorf said.
The bill from Lassa and Representative Todd Novak of Dodgeville would require all newborns in Wisconsin to be tested for Krabbe Leukodystrophy. It’s being called “Collins Law,” for the 4-year-old son of Kevin and Judy Cushman of Wisconsin Rapids. “January 6th, 2012, we got the diagnosis that Collin had Krabbe Leukodystrophy, and our world was changed forever,” Kevin Cushman said.
“Adding Krabbe to the newborn screening is one more important step we can make to ensure that all children in Wisconsin have a chance to live long, healthy and happy lives,” Lassa said. The lawmaker said New York, New Jersey, Missouri, Illinois, Pennsylvania and New Mexico have already instituted the screening, and other states are considering adding Krabbe to their infant screening panel. She said the umbilical cord transplant treatment for Krabbe has been between 80 and 90 percent effective in slowing the disease.