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Val Creviston group helps children with 'invisible disabilities'

Jacksonville Journal-Courier - 7/16/2022

Jul. 15—Parents who have children with "invisible disabilities" sometimes can feel like they're all alone.

To help make sure that doesn't happen, Routt girls' basketball coach Val Creviston and a cousin, who both have children with autism, co-founded a not-for-profit organization called "Operation Uniquecorn."

"At a family party, we kind of discussed how much difficulty we were having navigating certain things, like health care and the educational system, and kind of getting frustrated with things," Creviston said. "We found that we were encountering the same problems, and thought that if we could kind of build a community that would help support each other — almost create a sounding board for other families that were having similar difficulties — we could help each other out, basically."

Operation Uniquecorn, founded two years ago, is starting to make a difference. The organization has a scholarship program to give money to families that need assistance, helping pay for therapy, equipment, travel expenses and medication, which can cost hundreds of dollars a month. Several runners at the Milwaukee Lakefront Marathon raised $10,000 for Operation Uniquecorn last year. Creviston said the group is trying to reach $20,000 so it can make an even bigger impact.

"Hopefully after the end of this year we can start divvying out some funds to help different families in the area," Creviston said.

The group will have a major fundraiser this Saturday, July 16, at Community Park, with a 5K walk/run beginning at 8 a.m. that will kick off a family fun day at the park. The event also will include a kids' fun run. The Rotary Club will be operating the Ferris Wheel, and Key Events will provide bounce houses. Food trucks will be there, and Chris Camp, the Whip Guy, will perform at around 10 a.m.

About 60 runners have already signed up to participate. You can still sign up for the race online at https://runsignup.com/uniquecorn5k through Friday. Major sponsors are Westown Ford, Future Champions Fields, Judy Eoff's team at RE/MAX Results Plus, JACK'd Nutrition, Key Events, Quicklane Car Wash, Springfield Running Center and Whalen Trucking.

Creviston wants Saturday's event to help educate the community about Operation Uniquecorn. She hopes the organization also can help the public understand that when kids with invisible disabilities act differently, it's not because they're bad kids.

The group has a strong social media presence on facebook, TikTok and Instagram. "On those different platforms, we'll post different things — either educational tools that families can use or just kind of sharing stories of other people's experiences, just to kind of help families create a conversation," Creviston said.

Creviston remembers helping one mother in particular.

"She was kind of lost and very overwhelmed because of her daughter's behavior and things like that," she said. "She didn't know how to handle it, and she wasn't getting a lot of help from her primary care physician, and so she just needed a little guidance. She talked to our board, and through me and another one of the board members, we helped steer her in the right direction, and finally they started getting somewhere — getting diagnostic testing and the proper testing that she needed."

Creviston is a doctor of physical therapy, but being a part of the medical system wasn't much help in her own situation. Different specialists diagnosed her daughter with different medical problems but never seemed to link them together.

"Finally, I went to our primary care physician and I said, look, you guys are missing something," Creviston said. "So I had asked for genetic testing, and finally they found out that she had this rare chromosome deletion which kind of explains all the things she was encountering.

"It's just frustrating as a parent," she said. "I was having difficulty, even being in the healthcare system. Somebody that has no medical background, I would imagine, would be struggling even more. And so that's another reason why we wanted to form this community for families.

"We learn from other people's stories, so one family's story is going to help another family navigate through their journey," Creviston said. "That's ultimately what we want to do."

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