A La Porte County Life in the Spotlight: Brandy Witherby

Brandy-WitherbyBrandy Witherby is not one to sit down and accept it when she hears bad news. She would rather walk to Conquer Chiari, and invite her community to join her.

Chiari is a medical condition so rare that the average practitioner has to look up its symptoms before considering a diagnosis. Many doctors and nurses have not even heard of it. Brandy found out about Chiari when she was diagnosed in 2013.

Chiari is a congenital malformation at the crossroads of the brain and the spinal cord that restricts the space available for normal growth. Sometimes, one or both sides of the brain do not form properly. In rare cases, the brain will grow through an opening in the back of the skull. In most cases, the brain descends through the bottom of the skull, putting pressure on the spinal cord.

Chiari puts a lot of pressure on the brain. This pressure can be in different places or varying severity, depending on which type of defect the person has and what strain they encounter in a day.

Which means that the mystery bag of symptoms is a nasty surprise. Some people are spared symptoms while others get to experience every single one. The struggle can be different every day.

“Chiari affects every aspects of my life,” Brandy says. “I never know what symptoms I will experience day to day. I know I will have headaches daily; my symptoms will worsen during rain, storms, and the winter months. I can't lift anything like cases of water or I will trigger all the symptoms. I can't lay back and get my hair shampooed, go to a carnival and ride the rides, or even go for a run. My cell phone is always going off with a reminder for one thing or another because Chiari destroys your memory. My freezer is filled with ice packs and my night stand looks like a pharmacy. I have a daily worry my daughter will develop all the same symptoms one day.”

Brandy’s nine year old daughter has been diagnosed as well, but symptoms do not usually present until the person is in their twenties.

They want answers long before then.

Conquer Chiari has been a resource to the Witherby family ever since Brandy was diagnosed. They offer support, information, and an annual walk to raise awareness and funds for this chronic disease.

The Conquer Chiari walk has several locations across the nation all participating at the same time. The point is to metaphorically walk across America. “It makes us feel united,” said Brandy, and she wanted to get involved.

So she wrote in to Conquer Chiari about organizing a walk in La Porte. She chose Kesling Park to be the beginning and the end of the fundraising exercise. The first walk was on September 17th.

“People in our community should support this cause because so many children are affected by it. These children need to see our community- their community- supports them. Schools in our area really don't know anything about this condition either so this could help us bring more education to them,” she explained.

Since Conquer Chiari began their Walk across America in 2008, they have raised over a million dollars in research money. The La Porte goal was to add another $5,000 to that total.

Brandy’s family and friends get involved but they are not the only ones she hoped to see at the Walk.

“Donation requests are so impersonal,” she explained. “There is no bonding done or memories made that way. People who donate from requests wouldn't get a chance to meet the people they are helping.”

A breakthrough in Chiari Malformation research would change 300,000 lives in this country alone. Chiari has taken Brandy’s family business from her, and public school away from her daughter. Being a stay-at-home mom is a bittersweet role for her, but it gives her more time to focus on the various support groups she runs for Chiari.

Organizing the Chiari Walk is something that takes a lot of Brandy’s energy. She does not just do it for herself, or for her daugher. She does it for an entire community that needs help.

Compassionate events like these that are molding us into a greater community than we have ever been before. The Chiari Walk gives hope to sufferers on a national level, and hope of a stronger community on a personal one. Other local events show that we are growing as a town, a county, and a neighborhood. It took one woman to bring the Chiari walk to La Porte, and it will take our entire village to raise the event to what it can be.