Nebraska family copes with daughter’s ‘one in a million’ diagnosis, gets major community support

SHUBERT, NE — Mariah and Cody Meyerkorth never thought they would become experts on one of the rarest medical conditions in the world.

But when it concerns your daughter, parents do what they have to do.

“They will sit down and look at me and say, ‘you educate me, mom. I’ve talked to other doctors who said it’s so rare that we don’t know much on it, but if want to know anything on it, ask Mom,'” Mariah said.

ZARD is a neurodevelopmental disorder formerly known as Wieacker-Wolff syndrome. Their three-year-old daughter, Ensley, was just the sixth girl ever diagnosed with the condition.

“It was pretty hard, I don’t know, I really didn’t know how to process it," Cody said. "You’re nervous, you don’t know what to do, you have a lot of questions.”

But doctors don’t have many answers. What they do know, is Ensley has the smallest deletion ever recorded in the 11th chromosome. It means she can’t walk, roll over, sit up or talk on her own because of muscle weakness. She has contractures in several areas and one leg is shorter than the other. When Ensley gets sick, it means a week-long stay in the hospital, like the emergency trip to Kansas City at five months old that eventually led to her diagnosis.

“There was a couple close calls that we had with her that we didn’t think that she was going to make it, but she came out of it," Mariah said. "She’s a little fighter.”

Through the HTRS school district, physical and occupational therapists come to the family’s home in rural Shubert weekly and work with Ensley.

The Meyerkorths work as advocates for their daughter and spread awareness about her condition. That’s why they reluctantly agreed to be the beneficiaries of this year’s Wild Bill’s Chasing Dreams, a popular charity poker run sponsored by a bar in Rulo. It yielded more than $22,000 for the family.

“When they came out to me and said, ‘we counted it, $22,000.’ I just wanted to fall," Mariah said. "Never in a million years did I ever think that kind of money could be raised, especially for us.”

Their son Carter’s HTRS youth baseball team also organized a fundraiser generating more than $1,400 in donations.

“It's amazing. It lets you know that small towns still have each others' backs and you're one big family,” Cody said.

The funds will help with transportation to frequent therapy sessions and doctors appointments in Lincoln and Omaha. Eventual expenses like a wheelchair and possible hip reconstruction surgery loom on the horizon.

In the meantime, the Meyerkorths are savoring every smile and taking things day by day.

“You never get used to it, but you kinda understand how to deal with it in a good way,” Cody said.

“You gotta do what you gotta do for your kid," Mariah said. "Give them the best life.”

Mariah says there have now been nine girls in the world diagnosed with ZARD. Through a Facebook group, Mariah connected with a family in Dubai with a daughter who has the most similar case to Ensley.

If you want to donate, there is a fund set up for the family at F&M Bank in Falls City.

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