JOINT RESOLUTION CALLS FOR SCREENING FOR RARE, FATAL GENETIC DISORDER IN NEWBORNS

Posted: June 08, 2015 | Front Page, Senator Haskell

Resolution urges screening of Krabbe disorder to prevent misdiagnoses

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Senator Haskell welcomes the family of Addilyn Davis in the Senate Chamber

 

AUGUSTA – Today, in response to legislation sponsored by Senator Anne Haskell of Portland, the Maine Senate passed a Joint Resolution urging Maine’s Newborn Screening Program Joint Advisory Committee to include additional screening for a rare, fatal genetic disorder called Krabbe Disease.

 

Earlier this session, Democratic State Senator Anne Haskell sponsored a measure, LD 84 to expand newborn screenings to Krabbe Disease, however the bill was reported ‘ought not to pass’ out of committee.

 

However, thanks to the fierce advocacy work of Jamie and Kyle Davis, parents of three-year old Addilyn, who is afflicted with the disease, the Newborn Screening Program Joint Advisory Committee is now looking to include additional screening tests that identify infants at risk for other serious developmental, genetic and metabolic disorders that would not otherwise be detected, including Lysosomal Storage Disorders and Krabbe disease.

 

“I can’t remember an experience that’s touched me anymore than meeting the Davis family and experiencing Addilyn’s journey of hope,” said Senator Haskell of Portland. “It has been an uplifting, terrifying, painful, and marvelous journey to learn more and more about this disease. The way this family has stood up, cared for, and advocated, simply cannot be matched.”

 

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 people. Children affected by Krabbe suffer greatly and often do not live beyond their second birthday.

 

“It is the single-mindedness of this family that has brought this issue to the forefront for consideration,” added Senator Haskell. “I will forever be grateful for the opportunity to have known them and have them cross my path. I encourage you all to become aware to know more about this disease.”

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