MADISON, WI (WTAQ) – Two Wisconsin lawmakers want to add a rare degenerative disorder to the list of diseases for which newborns are required to be tested.
Senate Democrat Julie Lassa of Stevens Point and freshman Republican Todd Novak of Dodgeville announced a bill Wednesday to add Krabbe disease to the state’s Newborn Screening Program.
It’s being called “Collin’s Law,” in honor of 4-year-old Collin Cushman of Wisconsin Rapids. His parents, Kevin and Judy Cushman, told a State Capitol news conference their world changed forever when Collin was diagnosed just over 3 years ago.
Kyle Heckendorf of Mosinee told of his son Bryce, who died from Krabbe’s when he was 18 months old.
Kevin Cushman said Wisconsin kids would have a chance to live longer and happier if Krabbe is added to the newborn screening list. Lassa said neighboring Illinois is among a half-dozen states which require it — and others are looking into it.
According to the Mayo Clinic, Krabbe Leukodystrophy affects one of every 100,000 American children. Symptoms often develop in a baby’s first six months, and is normally fatal by age 2. In older people, the course of the disease varies greatly.
There’s no cure for Krabbe, but the Mayo Clinic says stem cell transplants show success in treating infants. Lassa says umbilical cord transplant treatment is 80 to 90 percent effective in slowing the disorder.
(Story courtesy of Wheeler News Service)
