Update: Jaylah loses her battle with Krabbe Disease

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It’s a family journey we have followed for many months.  Jaylah was a beautiful young girl who fought Krabbe Disease, a rare, often fatal disorder that affects the nervous system.

We learned that Jaylah passed away today. Jaylah’s family shared her story with us in hopes of expanding newborn testing to include her disease. Shortly after her story aired on FOX43 News, a state lawmaker introduced a bill to mandate that testing, which the Pennsylvania General Assembly passed.

Other than Pennsylvania, New York is the only state that tests for Krabbe Disease.