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Walk for Chiari awareness set for June 1 on Main Street

Jonesborough resident Donna Renfro knows all about Chiari brain malformations.
Structural defects in the cerebellum — the part of the brain that controls balance — Chiari Malformation can cause headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea, impaired coordination, and, in severe cases, paralysis.
Renfro discovered she had the disease after a minor traffic crash in 2004 sent her symptoms into fast forward.
She was bedridden, and at one point blind, deaf and paralyzed. It took months for doctors to diagnose her with Chiari Malformation, a condition that is not commonly talked about but is estimated to affect some 300,000 people in the country.
Renfro’s daughter, Miranda, also has the condition. She was diagnosed in June 2006 and underwent her first surgery related to Chiari Malformation later that same year. She was 12 years old at the time.
Miranda continued to deal with symptoms for several years, but was able to function in everyday life. In January 2010, a fall down a set of stairs changed all that — for the better.
She once again needed surgery, this time a brain decompression and fusion of her neck. She underwent the procedure in July 2011.
“Since she had that surgery, her recovery has been amazing,” Renfro said. “She still deals with balance issues but she’s doing fantastic. They got to her before it got too bad.”
Renfro credits continuing research on the condition and new medical techniques to treat it with helping save her daughter’s life.
Now 19, Miranda is a junior at Liberty University with excellent academic standing, her mother said.
“Knowledge and research is what is helping,” Renfro said. “She can turn her head where I can’t. That is how much treatment has improved over the years.”
For the second year, the Renfro family is joining forces with the Chiari and Syringomyelia Foundation to host a special walk in Jonesborough to bring awareness to Chiari Brain Malformation.
The “Unite @ Night” walk will take place on Main Street in downtown on Saturday, June 1. Beginning at 7 p.m., the walk is dedicated to bringing people together for awareness as well as fundraising. Registration for the walk will be held at the downtown courthouse beginning at 6 p.m. Walking is free; however, for a $25 donation to Chiari research, participants will receive a balloon. For a $50 donation, participants get a balloon and T-shirt.
For more information, contact Renfro at [email protected] or 913-1155.