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In Woodbury, a Rare Genetic Disorder, a Wish for Wyatt

Fundraiser for family whose child suffers from cardiofaciocutaneous syndrome set for Sept. 8.

Wyatt Krejce has cardiofaciocutaneous syndrome (CFC), a rare genetic disorder. Only 200-300 people in the world have it.

Wyatt is 7 months old, and his parents, Woodbury residents Corey and Amanda Krejce, are looking for a little support from the community in the face of mounting medical bills.

A benefit for Wyatt is set for 3-9 p.m. Saturday, Sept. 8, at Dugarel’s Burgers and Wings in Hastings. Tickets for a spaghetti dinner cost $10 for adults and $5 for children. Wristbands for a “beer bash,” 5-9 p.m., cost $15. There will be raffle drawings and a bake sale, and financial donations will be accepted. It is a family-friendly event.

At the three-month mark Corey and Amanda noticed Wyatt’s development wasn’t where it should be, and the child suffers from seizures, cardiomyopathy and other issues, including needing hearing aids and requiring a feeding tube to eat.

“It’s brutal,” Corey said. “It’s heartbreaking to watch the seizures.”

There is no cure for CFC.

“All you can do is deal with the symptoms,” Corey said.

While the family does have insurance, they make too much money to qualify for most assistance programs, Corey said. “We’re caught up in a Catch-22.”

It’s been difficult for the family to deal with the constant hospital visits, Amanda said.

“Some days are better than others,” she said. “But we’ll go in for one (doctor) visit, and then have another. We feel almost defeated. … It’s been hard. It’s just hard altogether.”

In response to the increasing medical bills and constant pressures for the family's time, the support from neighbors has already “been overwhelming in general," Corey said.

Amanda, too, wanted to thank those who have lent a hand.

“Even people we don’t know have reached out,” she said. “It’s all for the benefit of this little boy.”

For more information about the Sept. 8 event, email krejcebenefit@yahoo.com.

 

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Kris Janisch August 22, 2012 at 03:59 PM
Reef, had to delete your comment. It just seemed cruel, even if that wasn't your intent. Refer to our terms of use for more information: http://woodbury.patch.com/terms
Erin Bjorklund August 23, 2012 at 12:08 AM
Wyatt is such a sweet special boy. I'd like to add my personal thank you to all the people that have touched his life and the lives of Amanda, Corey, and big sister Lyla. From Gramma B. (Amanda's mom)

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