- Associated Press - Monday, May 16, 2016

WESTHOPE, N.D. (AP) - Last August, Westhope-Newburg-Glenburn football co-coach Layne Fluhrer brought his players to Minot for a handful of preseason scrimmages at Herb Parker Stadium.

The bus ride from Westhope was typical, he said.

The trip home certainly wasn’t.

After their scrimmages, the Sioux boarded the bus like any other game day, Minot Daily News (https://bit.ly/1WnY5EK ) reported.

Early victories. Preseason optimism. All smiles.

Moments later, Layne Fluhrer received a call from his wife, Kaitie.

In an instant, football lost all significance.

“I definitely remember that day,” he said. “That was the day that we found out.”

That evening, Kaitie delivered life-changing news to her husband. Their son, Jayce, had been diagnosed with a rare genetic condition known as microdeletion syndrome.

Jayce’s particular condition is astonishingly rare.

Since 2003, only 13 cases of Chromosome 2 deletion have been diagnosed in the United States, while just seven others exist worldwide.

One of those cases can be found in the tiny town of Westhope, North Dakota.

“For me it was a shock,” Kaitie Fluhrer said. “It was kind of surreal, because I was the one who got the phone call. I wasn’t supposed to, but I got it. It was just a weird, weird feeling. You never expect something like that to happen with one of your kids. You expect them to be healthy, and Aleia (her 3-year-old daughter) is as healthy as all get out. I don’t know. The entire situation was unreal.”

After being diagnosed at six months, Jayce is missing roughly 20 genes from his second chromosome.

“Which isn’t a lot,” Layne Fluhrer said.

But he’s missing the big ones.

Those absent genes promise to handicap Jayce his entire life.

Of the 13 diagnosed cases of microdeletion syndrome in the United States, none live independently. All have an IQ below 50. Most have an IQ below 30, while nearly all struggle with mobility issues of some kind.

Now 15 months old, Jayce is “behind in everything from a developmental standpoint.”

But the Fluhrers are working to correct that.

Baby steps.

“Slowly but surely, we’re just trying to get him to catch up to where he’s supposed to be,” Layne Fluhrer said. “He’s behind in the charts in height, weight, things like that, but also with the developmental stuff. We’re doing everything we can to help him.”

Yet no matter the progress Jayce makes over the coming weeks and months, he’ll surely be hindered in certain areas moving forward. That’s the hand he’s been dealt.

“Once he was diagnosed, right away we started to figure out what to do next,” Kaitie Fluhrer said.

Nine months later, they’ve already noticed signs of improvement.

Thanks in large part to the help from the Minot Infant Development Program a Minot State organization bent on assisting developmental delays in children Jayce has made “incredible” strides in the past few weeks alone.

This time last month, simple actions like sitting, crawling, clapping and playing with toys were lost on the Fluhrers’ youngest child.

Now, he’s quite active.

“He’s sitting up right now. Two weeks ago, he wasn’t able to do that,” Layne Fluhrer said. “He’s already come so far.”

And the buck doesn’t stop here.

The Fluhrer family is keen to see Jayce progress even further, and it’s confident he will.

With the support of the Westhope community which both Kaitie and Layne deemed “overwhelming” and “amazing” the Fluhrers aren’t settling for the norm.

They’re going to fight for every inch.

“The sky’s the limit for this little guy, and that’s totally fine with us,” Kaitie Fluhrer said. “Anything he wants to do, we’re going to let him do.”

“With the intellectual issues and the developmental issues, those are all what it’s supposed to be, but there are always exceptions,” Layne Fluhrer said. “If that’s what his life becomes, then that’s what it is, but we’re going to shoot for more.

“We’re going to aspire for everything and push him to be as much as he can be.”


Information from: Minot Daily News, https://www.minotdailynews.com

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