It’s been almost 8 months now since an 11-month old from Upstate South Carolina passed away. Dylan Emery from Greenwood county died of a rare genetic disorder..
Now, lawmakers are changing the state’s newborn screening process to make sure other families don’t suffer through the same tragedy, and they’re calling it “Dylan’s law”.
The Department of Health and Environmental Control currently screens newborn babies for 53 different diseases and disorders, but after the death of baby Dylan, lawmakers have added a few more to that list
“Pregnancy was great, delivery was great, he was born he was perfect.” Said Melissa Emery, Dylan’s mother. “We had no clue anything was wrong with him.”
Dylan passed away in October from a rare genetic disorder. Melissa said “We went to Greenville where they did some testing and MRI, and they still couldn’t figure out, so we went home and waited for about a week and they told us the diagnosis. “
He was diagnosed with Krabbe disease. But, Melissa said they didn’t get the news in time. “You can do a stem cell transplant if it’s diagnosed early enough, but we didn’t find out until it was too late.”
Representative John McCravy from Greenwood filed legislation to make sure other parents are aware of diseases like Krabbe early on.
Representative McCravy says “Our state does not test for Krabbe disease and so the reason it is critical because after 4 weeks it’s too late to do treatment who are born with this disease.”
“Dylan’s law” adds Krabbe disease, Pompe disease and Hurler syndrome to the list of 53 diseases already screened in a newborn. “All states require newborn screenings for the benefit of the children.” Certified genetic counselor Janice Edwards says, “the conditions that are on the 50 or so that are tested that are rare and also very serious in early life. So the earlier we know the better we can take care of that baby.”
Even though the Emery’s were not afforded the opportunity to intervene and offer treatment to baby Dylan, they’re hoping this law will make a difference for other parents. Dylan’s father Matt Emery said “If we knew when he was born that he had this disease we could have went to Pittsburgh went through that process, but we could have done it, and he’d been here healthy and been here playing on the beach with us.”
Newborn screening is something that is done on the national level and has been taking place here in the state for the last 50 years.
“Dylan’s law” is effective immediately, but lawmakers will have to work money into the budget for the equipment needed to test for the 3 diseases before the state can start screening newborns.