HUNTERSVILLE, N.C. (QUEEN CITY NEWS) — They say in difficult times, you find out who your friends are. Sometimes, those friends might even be strangers.

A Huntersville family learned that lesson after their little girl was diagnosed with a brain disease.

“It really just brightens up her day,” Jesse McKee said, who took his 5-year-old daughter Ella to Lenux Stables.

Ella has what’s called Vanishing White Matter Disease.

The estimated life expectancy is between 5 and 10 years old. As QCN witnessed, it can a beautiful thing when the community circles the wagons to lift someone’s spirits.

“I know what horses do for kids,” Brooke Vanderspuy said, owner of Lenux Stables. “It’s just so much bigger than the horses.”

She harnessed horsepower with humanity during Ella McKee’s visit.

“He loves this,” she said, brushing her horse Casper. “This is his job in life…to make little kids happy.”

“Little Ella comes to the farm because she loves the horses, and they make her smile, and they make her giggle,” Vanderspuy explained.

“See if he’ll come to you, say ‘Come here Stormy!” she told Ella, as a miniature horse came close.

“When she gets excited, you see it throughout her entire body,” Jesse said of his daughter’s reaction. “So, she gets this big smile.”

“Stormy also has very special shoes,” Vanderspuy says to Ella.

This visit is a welcome distraction.

“When we first found out about her diagnosis, it was depressing, to say the least. And the community has really rallied behind us,” said Jesse.

At home, a rare genetic brain disease is the elephant in the living room.

“Every day, the thought of her disease absolutely creeps into our minds,” says Heather McKee, Ella’s mother.

In 2019, doctors diagnosed Ella with a rare and terminal disease.

“But obviously, it was devastation,” Jesse told Queen City News.

The moment Ella’s parents were told, her mom Heather went blank for a moment.

“Everything just sounded muffled after that,” she recalled. “And we sat in the parking lot, and we cried… and the biggest thing we tried to get over is, ‘How do we tell her brother?’”

Family time is precious but fleeting.

Vanishing White Matter Disease impacts movement and speech, among other things. It also affects mental and physical development. There’s a drug trial underway to treat Vanishing White Matter Disease. Unfortunately, Ella is not eligible for it. But the McKees are hopeful that the trial yields great results for others with the disease.

“You know for her we don’t know how many months, how many days, how many years until the disease really takes hold of her life,” Heather said.

At an unsure time, there’s one thing they’ve learned to count on.

“She needs to know that everybody in this community is behind her,” says Vanderspuy. “And we’re a small part of that.”

So many people have made her happiness their priority.

“Honestly it has gotten us through this time that has just absolutely rocked our world,” Heather says.

The outpouring is always full of surprises. Lenux Farms dressed up Casper the horse as a unicorn, just for Ella.

“Do you want to ride him?” Vanderspuy asked.

“Yes!” Ella answers.

“Are you ready?” Vanderspuy said, lifting Ella onto the ‘unicorn’ with the help of her daddy. “Okay, here we go… here we go… yay, you got your unicorn!”

The moment that made Ella’s day was certainly a treat for her parents.

“Any sort of opportunity to put a smile on her face, you can’t put a price on it,” Jesse said.

“There you go!” Vanderpuy said, as Ella rode Casper with some assistance.

The trot helped take the McKee family’s mind off the unsettling trail ahead.

“Is that fun?” Vanderspuy asked. “Do you feel him going back and forth?”

“Yeah!” little Ella said. 

Everywhere she goes, Ella lights up the room… and yes, every stable. Her mom and dad believe she can also help shine a light on a little-known brain disease.

“Letting people know that ‘Hey, there’s not a cure,’ and that this could potentially take her life if there isn’t a cure found is the greatest thing, I think that we can do for the disease and for other families,” Heather says.

At the same time, the focus is on filling Ella’s days with experiences of a lifetime.    

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