Life of SC baby still resonates 1 year after his death

GREENWOOD, S.C. (AP) — Late Monday afternoon (Oct. 14), a man approached Matt Emery as he stood with his wife, Melissa, and their three children at Uptown Greenwood's fountain.

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He was lank, leaning on a cane for support. His shirt — unbuttoned enough to expose his upper chest — was wrinkled. His teeth were gapped, and he had a small growth of stubble under his chin.

The man asked whether Matt had any money, and Emery reached into his wallet and handed over a few crisp dollar bills.

Over a 15-year career in law enforcement, the Greenwood County sheriff's deputy grew accustomed to seeing the negative around him — perhaps ascribing motives to people based on his assumptions.

But on that quintessential autumn afternoon, there was no hesitation from Emery as he handed over the money.

Dylan taught him anew.

"You see life differently. In my line of work, that's what's dealt with, is the negative. But then you see the positive, and how wonderful the community is you live in, and it really changes you," Matt said. "Dylan changed all that for me."

Dylan Michael Emery, of Ninety Six, spent 340 days on Earth. He had a shock of soft brown hair and a pudge around his mouth that gave every smile extra strength. A perfect boy that the young Emerys welcomed to their blended family. Abi and Evie and Andrew had a baby brother. There was so much joy ahead when he was born.

But soon after he came home, the trained parents began noticing their baby wasn't meeting growth thresholds. Something was wrong, they knew.

In May 2018, Greenwood Genetic Center researchers returned frightful news: Little Dylan had Krabbe disease. It's a ferocious disorder that put the child's development behind a firewall, eroding the production of myelin in his nervous system.

Without that critical layer of insulation around his nerve clusters, electrical signals from the brain were drastically slowed or halted, resulting in the gradual shutdown of his organs.

There's no cure for the condition that manifests in roughly 1 out of every 100,000 babies — meaning about 2 cases a year emerge in South Carolina — and most born with it have a life expectancy of 13 months.

Dylan died on Oct. 16, 2018. He was almost a year old.

Intensely private, the Emerys turned to their faith for guidance following Dylan's prognosis.

"I begged and pleaded and was mad at God and yelled and screamed and cried and blamed him and then blamed myself. And then one Sunday morning, Dylan and I were laying there on the floor in our spot, and it was just like a whole peace came over the house and I knew that Dylan was going to heaven, and that it was going be hard, but that we were going to make it through it," Melissa said.

What neither could comprehend was how much company they'd have on the heartbreaking path that stretched before them — including legislative support from Greenwood state representatives John McCravy, a Republican, and Democrat Anne Parks, who together ushered through H. 3036, today known as "Dylan's Law."

The measure, signed into law by Gov. Henry McMaster on May 16 — seven months to the day of Dylan's death — added Krabbe and two other lysosomal storage disorders to the state neonatal screening panel administered to every newborn.

"I don't know how to describe that feeling. It's a bittersweet feeling. If I could change it, I would change it so Dylan wouldn't have to have Krabbe, but since he did, I think we used it to hopefully other babies' benefit," Melissa said.

Nonverbal though he was, Dylan communicated to the world around him in such a way that Matt said it had to have been orchestrated by God.

"I feel like Dylan in 11 months and 11 days, he touched more people than we could ever touch in our entire life. He did it, and he didn't even speak, and it just blows your mind," Matt said.

At Dylan's funeral, which took place on a powerfully warm October afternoon, there were fewer tears shed than may have been expected because the sadness, though palpable, was enmeshed with so many memories of abiding good.

The May 2018 lemonade drive Andrew oversaw that raised $6,000 in just a few hours to offset medical expenses — an act of love that went viral and brought national attention to Dylan and Krabbe disease.

Thousands of "Team Dylan" wrist bands and windshield decals and powder blue T-shirts, the proceeds of went to research institutions and helped keep the family afloat as Matt and Melissa were out of work.

Clemson University second baseman Jordan Greene, who wrote "#4Dylan" on the side of his jersey during a May 2018 semifinal game against Florida State in the Atlantic Coast Conference tournament.

Meeting and then accepting as family Christian and Michael Hindman of Spartanburg, whose daughter Naomi is also living with Krabbe disease.

"It's like a snowball effect. Everybody got on and it started rolling and that's what we started living for. While Dylan was sick, our goal was to spread awareness and after he passed — it's a lifetime goal — is Dylan's legacy, and it's our job to carry out, and we're going to," Matt said. "I can't tell you how many times we're in public and somebody will stop us, know us by name, we don't even know them and they'll let us know, 'we love y'all, praying for y'all,' and just kind words. I'll tell them anything about Dylan, to anybody. When it comes to Dylan, I'm always going to tell his story, anything they want to know, even if it's a stranger."

Dylan rests at Elmwood Cemetery in Ninety Six, frequently visited by his parents.

"We go together at times, but most of the time, it's when we have time and you just go to try and find comfort. I enjoy going to cut his grass, keeping it manicured, keeping the rocks clean. It's almost like you're taking care of him still, beyond the grave," Matt said.

Melissa makes trips every Monday and Friday.

"It's hard, but I feel like I'm closest to him there. I mean, I know his body is there, but I talk to him just like he's right there, I tell him all the time, 'please come see me,'" she said.

Their son's greatest gift to his parents, they said, could be allowing them to see that there actually are no strangers.

We want to give back, just like that guy right there that Matt saw," Melissa said. "We talk about it when it's us. We just say, 'you know, God did that perfect timing, or that was a little wink from Dylan.'

Matt said in that moment, Dylan controlled his hand — his heart.

"I just think about today, because that's all we're here for. If we're here tomorrow, we'll deal with tomorrow then. You used to think somebody like that was just begging and things like that, but if you follow what God tells you, you're supposed to give to the poor. What they do with the money is between them and God," Matt said. "That's us doing our part, that's what we're supposed to do."

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Information from: The Index-Journal, http://www.indexjournal.com

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