It’s been almost 8 months since Dylan Emery, an 11-month-old from Greenwood County, passed away from a rare genetic disorder. Now legislation is being changed to make sure other families don’t have to go through the same tragedy.
The SC Department of Health and Enviornmental Control currently screens newborn babies for 53 different diseases and disorders, but after baby Dylan’s death lawmakers have added a few more to that list. “
“Pregnancy was great. Delivery was great. He was born he was perfect. We had no clue anything was wrong with him.”
Melissa Emery recapped bringing baby Dylan home from the hospital and the first time they realized something was wrong. Dylan cried excessively and wasn’t meeting his developmental milestones.
“We went to Greenville where they did some testing and MRIs and they still couldn’t figure out. So we went home and waited for about a week and they told us the diagnosis,” explained Melissa Emery.
Dylan was diagnosed with Krabbe Disease. The Emery’s received the news it was too late.
Melissa Emery continued, “You can do a stem cell transplant if it’s diagnosed early enough, but we didn’t find out until it was too late.”
So Representative John McCravy from Greenwood responded. The upstate lawmaker filed legislation to make sure other parents are aware of diseases like Krabbe early on.
“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,” said Rep. McCravy.
The new law adds Krabbe Disease, Pompe Disease and Hurler Sydrome to the list of 53 diseases already screened in a new born.
Janice Edwards, a certified genetic counselor with Prisma Health and USC School of Medicine, detailed the history of the screening and its importance.
“All states have require newborn screening for the benefit of the children. 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 makes a difference for other parents.
Matt Emery continued, “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.”
The law is effective immediately; however, lawmakers will have to work money in the budget for the equipment needed to test for those 3 diseases. SCDHEC says the state has allocated an extra $53,000 in this year’s budget to start the process.