Jaxon Clark brings excitement to children’s charity benefit in Lake Wylie

Jaxon Clark, 5, ought to come with a warning label.

Not because he greets visitors with the pointed, continual clicking of his orange plastic rifle. Not for the enthused pounding on a drum set he got for his birthday, or the mammoth inflatable soccer ball he barely can see over but can kick just fine.

But be warned. Somewhere between the giggles at a shuttering camera and his offering a stranger the hat straight off his daddy’s head, it’s hard not to like the kid.

“Everybody around here knows him,” said mom Angel. “Maybe it’s the red hair. They just know me because of him.”

Angel and Robert Clark describe themselves as boring. The most excitement they had in more than a dozen years near their home at the foot of Nanny’s Mountain was when the house burned down. They still haven’t settled blame on cook or cast iron pan.

“He was trying to cook hush puppies,” Angel said. “It didn’t turn out too, well.”

Two girls, now 17 and 13, brought their own brand of adventure. But nothing, not siblings nor singeing, prepared the Clarks for the baby boy who arrived five Septembers ago. Angel would’ve said so before the diagnosis. It’s just as true after.

“He’s never had boundaries,” Angel said. “He has even less now. I want to let him do it while he can do it.”

Full throttle

Jaxon is an outside, jeans-and-boots type of kid. But for the red hair and height difference, he’s a near shadow of his daddy. When Jaxon gets a snack, he pours the dog one, too. He loves looking at animals, and riding his cars through the front and back yards.

“He’s got more cars than we do,” Angel said. She smiles. “And they run better, too.”

It was a field trip last year when a woman, having seen it in a family member, asked Angel if Jaxon might have Hunter syndrome. The rare genetic disorder, almost exclusive to boys, involves a faulty enzyme. The woman knew more about it than many of the doctors Angel first approached. Jaxon wasn’t hearing. Fingers and toes curled, and arms wouldn’t fully extend.

On the last day of the year, doctors confirmed the diagnosis.

“First they tell you your child has 11 or 14 years. Then they tell you the last half of that, nothing good happens,” Angel said.

The family learned there’s no cure and those with the disease live until their early teens.

“I hit straight mourning when it happened,” Angel said. “Then it dawned on me, I don’t have time to be sad about something that hasn’t even happened yet. I’ll have time for that later.”

Jaxon attends a special needs class at Griggs Road Elementary School. He travels to Levine Children’s Hospital in Charlotte every Wednesday for a four-hour enzyme infusion. He has a trial this fall for a new medicine.

“None of it’s a cure,” Angel said. “It just slows it down.”

Some people, even family members, grew distant after the diagnosis. When people would ask questions, they’d spill apologies. The Clarks wanted more questions, figuring there’s no better way to find a cure. Now support is returning.

Angel posted they were going to Cherry Park for Jaxon’s birthday party, and close to 60 people joined them. With plenty of family in the Rock Hill area, visitors are common at the Clark home.

“A yard full of people, cars,” said Robert, a machinist at a local pipe fitting shop. “It looks like a car lot.”

He also is one of the recipients of Lake Wylie Children’s Charity benefit concert Oct. 4 in Lake Wylie.

Learning to live

With two older children, the Clarks talked for years about putting a playhouse in the backyard. Since Jaxon’s diagnosis, there’s a giant ship out back.

Jaxon mimics more than speaks, so he didn’t get in trouble the one time he repeated a word Angel probably wouldn’t have chosen for his breakthrough moment.

“If he’s talking,” she said, “I don’t care what he says.”

Rules are anything but set in stone.

“He likes to eat,” Angel said. “He likes to play. He likes to go and do. If he wants to eat Oreos for breakfast, I’m good with it.”

Angel figures there will be time for order, later. There also will come a time when she’d gladly take him running through the living room, massive soccer balls and drum sets included.

“Some days are really good, some days are really bad, but you wake up every morning with a choice to be happy,” Angel said. “It’s a choice that has to be made.”

This story was originally published September 22, 2015 at 11:57 AM with the headline "Jaxon Clark brings excitement to children’s charity benefit in Lake Wylie."