Bill to add Krabbe disease tests to new born screenings passes House committee

03/02/2015 04:37 PM

FRANKFORT — Twenty-two months ago, Nathan and Sarai Taylor had what they thought was a healthy newborn daughter named Anna who had passed all of the newborn screening tests.

However, when Anna was four months old, she showed signs of irritability, stopped eating and began missing her milestones.

After further testing, Anna was diagnosed with Krabbe disease, a neurological disorder where the brain shuts down. It has caused Anna to lose her sight, ability to eat, speak and move.

The life expectancy for a child with the disease ranges from 13 months to 2 years.

If Anna had been diagnosed with the disease during the screening procedure, she could have received a blood cord transplant, which very well could have led to a normal life for Anna. But, once the symptoms start, it is too late for that treatment.

Krabbe disease is not one of the things newborns are currently tested for in Kentucky but the parents of Anna hope to change that.

Senate Bill 75, sponsored by Sen. Alice Forgy Kerr, R-Lexington, which was passed by the committee, would require that all newborns to be tested for the disease as part of the standard infant screening process.

Sarai Taylor, who appeared with her husband Nathan and daughter Anna, told members of the House Standing Committee on Health and Welfare on Monday that the outcome could have been a lot different for her Anna had she been tested for Krabbe disease.

“If she had been screened at birth before the symptoms were present and she could have had this potentially lifesaving treatment and could have been living a drastically different life,” Taylor said. “We don’t want any parent to ever have to hear that news again.”

Rep. Mary Lou Marzian, D-Louisville, expressed concerns over the potential added cost of screening all infants and having those screenings reach the desired result.

“I think we have to be very careful when we mandate new treatments or new tests for folks when it may not have the efficacy that we anticipate,” she said.

Marzian, Rep. Phil Moffitt, R-Louisville and Rep. Addia Wuchner, R-Florence, originally passed but then agreed to change their votes to yes to get the bill out of committee.


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