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Middleburg family deals with rare, incurable brain disorder

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Updated: 11/21/2013 12:05 am
MIDDLEBURG, Fla. -- Amanda Wendorff, 31, still manages a smile under the worst of circumstances.

Action News met her a couple of years ago as she was trying to raise awareness for Chiari malformation, a genetic, incurable brain disorder from which three of her four children suffer.

Then another bombshell: "I, myself, have been recently diagnosed with Chiari malformation," said Wendorff.

The disorder causes excruciating headaches and requires regular surgery. She'll go under the knife in a couple of weeks. But before that, she and her husband, who is a deputy with the Clay County Sheriff's Office, have to travel to Augusta, Ga., to get their boys the care they need.

"It's just really a financial burden," she said. "And if I wait until the beginning of the year to do the trip, our insurance deductible will renew and we have a high-deductible plan."

So the family is looking to the community to help. They're holding a fundraiser this weekend, a car wash, giving a little in the hopes of getting a little.

"We really just want the community to come out and help us raise some awareness and some money to help us get our children taken care of. And to make sure we're OK while I'm in the hospital having surgery," she said.

The car wash is Saturday at 8:30 a.m. at the Auto Zone in Middleburg. You can also donate online. Find out how by clicking here.

To learn more about the family's journey, click here.
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The views expressed here do not necessarily represent those of Action News Jacksonville

Fivestevens - 11/22/2013 1:17 AM
0 Votes
I love seeing the awareness. But the the wrong facts. Yes chiari causes horrible headaches and whole long list of other problems. But it does not 'require' regular surgeries. In fact a lot of people never have a surgery. Some can even go their whole lives and never realize that they have it. There is no cure. And the surgery (if your doctor decides you need it) is usually only done to keep symptoms from getting worse. Like where my chiari caused Syringomyelia. A condition that causes a syrinx (like a cyst) to form inside your spinal cord. Destroying it from the inside. My point to this is please get the facts straight when it comes to spreading the word.

MommyWendorff - 11/20/2013 9:50 PM
0 Votes
Thank you so much Action News and Leslie Coursey for helping us bring awareness, get more prayer warriors and help raise money to help with these extremely costly issues. Please follow our story on Facebook by liking Team Wendorff if you would like to keep following our story. Also to clarify something I will be having a VP shunt placed on Dec 3rd then I will have decompression surgery in the following months. You can also donate to our cause at any Wells Fargo Bank in the name of Brayden Wendorff
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