LAWMAKERS & FAMILIES URGE SCREENING FOR RARE, FATAL GENETIC DISORDER IN NEWBORNS

Children with Krabbe disease can be treated with early diagnosis

AUGUSTA – Today, nearly a seventy-five people showed up in support for a measure that would expand newborn screenings to include a rare, fatal genetic disorder called Krabbe Disease.

The measure LD 84, sponsored by Democratic State Senator Anne Haskell, is in response to the advocacy and awareness of Krabbe as raised by the Davis family whose 3-year old daughter, Addilyn, is afflicted with the disease.

“We are in a position to see that families in Maine do not have to repeat the uncertainty faced by Jamie and Kyle Davis,” said Sen. Haskell of Portland. “For families facing this diagnosis, treatment could be different including new, early umbilical cord transplant which is showing remarkable results.”

Krabbe Disease (pronounced: crab-ay) is a genetic disorder that affects the central and peripheral nervous system by destroying the protective coating of nerve cells in the brain and throughout the body. It affects 1 in 100,000 live births; but 1 in 125 people are carriers for the disease. Children affected by Krabbe suffer greatly and often do not live beyond their second birthday.

New York, Missouri, Illinois, New Mexico, New Jersey, and Pennsylvania have passed legislation to add Krabbe to their newborn screening panels. Just last week, Kentucky passed a law to include Krabbe Disease among the list of diseases screened at birth.

The state’s health and human services committee is expected to hold a work session on the measure in the coming weeks.

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