Washington Evening Journal

Fairfield Ledger   Mt. Pleasant News
Neighbors Growing Together | Nov 22, 2017

Project creates bears for children

By Xiomara Levsen | Mar 17, 2017

A sew-in will be held Saturday morning in Washington to make “Rare Bears” for children with rare genetic diseases.

The sew-in will take place at 1415 West Fifth Street in Washington and will begin at 9 a.m.

“You don’t have to know how to sew to come,” according to Miss Southeast Iowa Johannah Vittetoe.”We have patterns to cut out or you can take a pattern with you.”

The goal is try to have 100 bears sewn for the Rare Bear project.

“You just sew the bear and you send it back to the Rare Bear people and then they stuff it and then they put a little patch on the bottom of who made this bear,” Johannah said. “Then they send you a picture of the child with the rare disease with your bear they received.”

The idea to have the Rare Bear sew-in event came after Johannah’s neice, Everlee, received one. Everlee is wheelchair-bound and probably won’t ever be able to walk because of a rare genetic disorder called congenital disorder of glycosylation (CDG).

Everlee’s brother, Breckyn, also has it, but hasn’t received a Rare Bear yet. She is hoping he can get one sent to him from this event.

The bears are called Rare Bears because they’re made from all different materials and don’t match.

“It’s just a Rare Bear for rare kids,” Johannah said.

When Everlee was diagnosed, her mother Crystal joined a Facebook group with parents who have kids with CDG and found out ways to give back, Johannah said.

“Then she kind of mentioned it to my mom and we’ve been talking about doing it for a while — it was just actually getting around to doing it,” Johannah said.

This will also help hopefully to bring awareness to CDG, she added. There are two out of 100 cases of CDG in the world with type A.

“Twenty percent of kids with CDG die within their first year of life, so research and awareness are like our only hope, “ she added.

The family found out Everlee had CDG first, which was when Everlee’s mom, Crystal, was pregnant with Breckyn, Johannah said.

“With Everlee we kind of were quiet,” she added. “We didn’t want to tell Johnathon and Crystal [their parents] that we thought there was something wrong with their child.”

Finally, a doctor at the University of Iowa heard about Everlee and asked to see her. This doctor would diagnose Everlee with CDG.

“I had never seen my brother [Johnathon] cry and that was the first time I saw him cry [when Everlee was diagnosed],” Johannah said. “It was nice to find an answer, I think, and to [think] ‘Ok, what can we do now?’ But to hear that 20 percent die in the first year of life is not fun, and then Crystal being pregnant, there’s a 1 in 4 chance that baby could also have it.”

There was also a chance Breckyn would be stillborn or not survive long after being born, she said.

“It was a hard time, I guess, to say the least — I mean for everybody,” Johannah said. “It wasn’t just Johnathon and Crystal. My mom and dad both took it very hard. I think all my other siblings — I think it was a reality check because they all have kids.”


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