Sofia was born in Virginia, where she was unable to get newborn screening for Krabbe disease since the Commonwealth does not screen for Krabbe. The state’s newborn screening practices impacted a timely diagnosis, worsening Sofia’s symptoms. She was diagnosed at 6 months of age with early infantile Krabbe disease—a diagnosis that came too late for early treatment and intervention. Since then, Sofia’s parents, Mike & Kelly, advocate at both the federal and state level for her and their family, and for other children and families impacted by Krabbe disease and newborn screening. Sofia’s mom Kelly says, “More children in the U.S. should not have to suffer and die to force change.”

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