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Hero Central: Middleburg Family Devastated by Chiari Malformation Brain Disorder

4:51 PM, Jun 1, 2011   |    comments
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MIDDLEBURG, Fla. -- The family of a Clay County Sheriff's Deputy are living through a nightmare. Two of their four children are undergoing brain surgery just a week apart and the other two children are likely to need brain surgery in the future. 

Brayden Wendorff, 7, just had his third brain surgery in a year.  He has Chiari Malformation, a brain disorder that causes him to have excruciating headaches.

"It is devastating," said his mother Amanda Wendorff. 

Only weeks ago, Brayden's 4-year-old brother Zachary was also diagnosed with Chiari Malformation. His brain surgery is Thursday. It was a devastating blow for the Wendorff family.

"Our doctor came in and told me about it and said, 'You know I really hate to tell you this, but his case is as bad if not worse than Brayden's case. So we need to just go ahead and prepare for surgery,'" she recalled.

The oldest, 8-year-old Skylar, has already been diagnosed with Chiari Malformation, but right now does not need brain surgery.  The youngest, 3-year-old Kami, will be tested for the brain disorder in July.  

"I'm just praying she doesn't have it. I mean all four of your children to have to go through a brain disorder that limits them from so many things," she said desperately.

In the midst of her own fears, the mother of four is using her compassion to reach out and help others also dealing with the unknown medical concerns of Chiari Malformation.

"I have been put on this earth with these children with this brain disorder and I'm going to educate people. I want to bring awareness. I want to help other parents. I want people to contact me and I want to hold their hand." 

To keep up with mounting medical bills and to return Brayden to a specialist in Boston, the Wendorff family needs your help. You're invited to a gospel music benefit this Saturday, June 4th. It starts at 7 p.m., at South Middleburg Baptist Church.

On June 6, the Texas Roadhouse in Orange Park is holding a fundraiser night for the Wendorff family.  From 5-9 p.m., 10 percent of the proceeds will go to the family.

To learn more about the fundraisers or Chiari Malformation, visit Amanda Wendorff's blog at either www.braydenschiarijourney.com or www.caringbridge.org/visit/braydenwendorff.

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