Wisconsin is on track to add Krabbe disease to its newborn screening program, offering hope to families affected by this rare and deadly genetic disorder. Krabbe disease is fatal if not detected and treated within the first 30 days of a baby’s life. A Wisconsin Rapids couple who lost their son, Collin, to the disease in 2019, is thrilled by this development. At least ten other states already screen for Krabbe disease at birth, and the U.S. Secretary of Health recommended adding it to nationwide screening in 2024. The recent unanimous approval by a subcommittee is just the initial step in a process that may take up to two years. The couple is committed to advocating for this screening after promising Collin they would see it through. This news brings a glimmer of hope to families in Wisconsin facing the devastating impact of Krabbe disease.
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