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 four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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