Dylan Emery’s life spanned 11 months, but his legacy will last forever.
Gov. Henry McMaster helped cement Dylan’s legacy on May 16 when he signed into law H. 3036, “Dylan’s Law.” The law adds Krabbe disease, Pompe disease and Hurler syndrome to the list of 53 diseases that are screened in newborns in South Carolina.
Dylan died before his first birthday at the hands of Krabbe disease which is an inherited disorder that kills the protective coating of nerve cells, called Myelin. One of every 100,000 people are affected by this disorder, and the ones that are affected typically don’t live past the age of 2.
State Reps. John McCravy and Anne Parks, Team Dylan, Naomi Hindman — a sufferer of Krabbe disease — and her parents, Christian and Michael, and other supporters showered Melissa and Matt Emery with affection and empathy as McMaster visited the J.C. Self Research Institute building at the Greenwood Genetic Center to ceremoniously sign Dylan’s Law.
“Our children are our greatest asset and if there’s a way to keep them from getting disease, keep them from getting hurt or catching things early so we can treat them then we ought to take care of every opportunity to do that,” McMaster said. “This is a big step forward for the state of South Carolina, but this technology and understanding can be used all over the country, so to have this as a part of our regular routine for testing of newborns is a good step forward.”
Department budget requests were made on Friday, and the state Department of Health and Environmental Control is asking for $543,619 in recurring funding to pay for the additional testing for the conditions added to the neonatal screening panel via Dylan’s Law.
“This will lead to more research, to more understanding and better health for the children growing up. We have to keep them healthy, safe and we have to educate them. If we can do that then South Carolina will keep going upwards like we’re doing now,” McMaster said.
This law gives Dylan a new life and purpose.
“This is Dylan’s legacy. I look at it as not a closure but a beginning so it’s a real good feeling and we appreciate everybody that’s helped support us,” Matt Emery said.
One individual that’s been in the Emerys’ corner since Dylan’s fight began was McCravy. He attributes the passing of H. 3036 to the community, the Emery family and Team Dylan.
“It’s a victory for them, it’s symbolic of all the work they did to get this bill passed. Unfortunately, there will be children born with this genetic disorder and in the future, we will have a screening test for that so they will have a chance at life,” McCravy said. “Life is what it’s all about and I believe in the sanctity of life before birth, after birth and even when you’re old; that’s what this is about for me.”
Dylan’s life was cut short, but he has a community and family to keep his legacy longstanding.
“He’d be very proud, I think he’d be very proud of momma and daddy, family and his community,” his father said.