New law making sure newborns in South Carolina are screened for rare genetic disorders

New law making sure newborns in South Carolina are screened for rare genetic disorders

GREENWOOD COUNTY, S.C. (WIS) - Newborns in South Carolina are now being screened for rare genetic disorders all thanks to a new law.

Monday afternoon, Governor Henry McMaster (R-South Carolina) was at Greenwood Genetic Center in Greenwood County for a ceremonial bill signing for Dylan's Law.

The legislation was named after a Greenwood County infant who lost his life last year.

Around this time last year, the Emery's were dealing with the loss of their beloved son Dylan. "We would absolutely rather have our baby boy here," his mother Melissa said.

A few months before Dylan passed away, doctors diagnosed him with a rare genetic disorder called Krabbe disease.

Dr. Steve Skinner is the Director at Greenwood Genetic Center. He is also the doctor who diagnosed Dylan and had to break the news to the family. He said it is always heart-wrenching sharing a diagnosis like that.

"Other than support and care there weren't many steps we could take," he said.

Dylan's father Matt said after they learned the news they went to Pittsburgh to see if there were any treatments that could help save Dylan's life.

"All they could do for Dylan was to give him medicine and keep him comfortable. From that point forward we took leave from our jobs and we enjoyed our time with Dylan and our families," he said.

Dylan passed away in October 2018. His family didn't want his story to end there.

That's why Dylan's family, friends established Team Dylan to raise awareness about the disease. Lawmakers from the Greenwood County area also tried to make a difference by introducing Dylan's Law. The legislation passed in the House and Senate in 2019 and was signed into law in May.

Health officials say there is no cure for Krabbe disease but stem cell transplants given to infants before symptoms of the disease appear have proven to be successful.

Dylan’s Law requires doctors to screen all newborns in the for Krabbe disease and other rare genetic disorders; like Pompe disease and Hurler syndrome. Officials believe early detection of these diseases will help save lives.

After Monday afternoon's ceremonial bill signing, Governor McMaster told WIS this new law will make South Carolina a safer place for newborns. "There are so many things people can handle if people are aware of what's out there. What could be a threat and what could cause harm and what opportunities are out there," he said.

The Emery's say even though Dylan spent a short time on Earth, he's going to make a big impact on many lives. "He's making a difference and his legacy is going to live forever through this law and help save other babies," his mother said.

Dylan’s Law also created a Newborn Screening Advisory Committee at the state’s Department of Health and Environmental Control.

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