Young boy’s parents fight to add rare Krabbe disease to newborn screening test

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BEAVERTON, Oregon ( KPTV ) — A 5-year-old Beaverton boy is fighting a rare disorder called Krabbe disease. His parents say it’s possible his life could’ve been saved had the Oregon legislature acted more quickly. Krabbe disease is a neurological condition that only affects 1-in-100,000 people. It’s slowly shutting down each of Emmett Monaco’s body’s systems, and his strong will to live won’t be enough to beat it.

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Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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