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'DYLAN'S LAW' REALIZED: South Carolina Begins Krabbe Disease Screening

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Greenwood Genetic Center
'DYLAN'S LAW' REALIZED: South Carolina Begins Krabbe Disease Screening

In 2019, SC Governor Henry McMaster visited GGC to sign Dylan’s Law, legislation that would add Krabbe disease to the state’s newborn screening test, also known as the heel prick test.


The law was named in memory of Dylan Emery, a GGC patient from Ninety Six, SC, who passed away from Krabbe disease at 11 months of age. His family worked with state legislators to add the rare disorder to the SC newborn screening panel allowing future affected infants to receive an early diagnosis with the hope of life-saving treatment. SC began screening for Krabbe disease on May 15, adding it to the panel of 55 other genetic disorders, becoming just the 11th state to test all newborns for this rare condition.


“We have been waiting for this day,” said Dylan’s parents, Matt and Melissa Emery. “This is proof that Dylan’s struggle and suffering will make a difference in other babies’ lives.”


“Because newborn screening is not a diagnostic test, all positive screens from the state must be confirmed to distinguish truly affected infants from false positive cases,” said Francyne Kubaski, PhD, a staff scientist in GGC’s Biochemical Lab. “That’s where GGC comes in.”


The Emery family has found comfort in knowing that Dylan’s legacy lives on. “We have always feared Dylan would be forgotten,” they shared. “We feel honored to be the parents of such a brave and amazing soul and are grateful to everyone who loved Dylan and helped put ‘Dylan’s Law’ into motion.”


“It is our hope that lives will be saved and other babies in South Carolina will have a better chance at survival if they are unfortunately diagnosed with this terrible disease,” added the Emerys.


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