During her first week in the sixth grade, Keegan Shaffer, 11, was tasked to write about the most important event in her life. While her fellow students wrote about a sibling’s birth or starting middle school, Shaffer chose to describe the nine-hour brain surgery she underwent as a child.
At the age of 4, Shaffer, of Charleston, was diagnosed with Chiari malformation, also known as Arnold-Chairi syndrome. She received the decompression surgery shortly after diagnosis in an attempt to ease her symptoms, which included an extreme curvature of her spine that was getting progressively worse.
According to Mayo Clinic, Chiari is a condition caused by the bottom part of the brain, the cerebellum, extending below the base of the skull. The brain tissue that extends out of the skull crowds the spinal canal and places serious pressure on the brain and spinal cord. Symptoms come in many forms, including scoliosis, blurred vision, slurred speech, dizziness and difficulty swallowing.
To raise money and awareness, Shaffer, her mother, Lori, and others affected by the condition have organized a Conquer Chiari walk at the West Virginia Capitol Complex Sept. 20.
Registration will begin at 8:30 a.m. and the walk will start at 10 a.m. Lori Shaffer said in addition to accepting donations prior to and during the event, attendees will be able to purchase raffle tickets and tickets for a 50/50 drawing.
People wishing to participate can pre-register online at www.conquerchiari.org or register on the day of the event. Shaffer said walkers won’t have a set distance to complete, just as far as they feel like going.
Donations can also be made online or at the event. The group’s goal is to raise $14,000. Lori Shaffer said the group has already been able to collect $9,000 thanks to corporate and individual donors.
All of the money raised will go to the nonprofit organization Conquer Chiari, which funds research, education and awareness programs across the United States. The organization also funds the Conquer Chiari Research Center at the University of Akron in Ohio.
“My hope for the walk is that we meet or exceed our fundraising goal. The more money we can get into research, the faster we are going to find a cure. But even more than that is awareness,” Lori Shaffer said.
In its fourth year, Charleston’s Chiari walk is one of 77 occurring in 41 states on Sept. 20. Within the state, Morgantown and Princeton will also be hosting walks.
“If they can’t come here, we want them to go anywhere,” Lori Shaffer said.
This will be the first year for Malisa Turner and her family to participate. Unlike Keegan, Malisa wasn’t diagnosed until she was 36 in 2012.
The mother of three and resident of Dunbar said she hopes the walk helps to increase awareness around the Charleston area. Since her diagnosis, Turner said she’s even struggled to find doctors that have previously treated the condition.
“One of the hardest things with it is there’s just not enough information and [it’s hard] finding a doctor who associates the symptoms that you are feeling with Chiari.”
Turner said her condition was only discovered after she experienced a mini-stroke while out to eat with her family in June of 2012.
According to the Mayo Clinic, many people with Chiari malformation have no signs or symptoms and depending on severity might not require treatment. Normally, the condition is detected when doctors are testing for unrelated disorders using magnetic resonance imaging [MRI] or a computerized topography [CT] scan.
“Just because somebody doesn’t look like there is something wrong with them doesn’t mean that there’s not. Because you can’t see it, doesn’t make it not real,” Turner said.
Turner said she has her good and bad days with the incurable condition, which is categorized in three types.
“I’ve been to several different neurosurgeons and neurologists, and at some point you just want them to give you a pill or a cookie … just something to give you some kind of hope that you’ll feel better.”
She added, “I really do have a lot of better days than bad days, but the bad days are scary — when your arm is numb, or your vision is blurry or you are confused. One day I called my kids the wrong name,” Turner said.
Because treatment for the condition depends on severity of the symptoms, Turner said her symptoms have not worsened to require the decompression brain surgery, which Keegan received.
Shaffer described the day when she knew something was seriously wrong with her daughter.
“She woke up one morning and her ribs looked like they were protruding from her chest.” Shaffer said at that point Keegan was experiencing a 20 degree curvature of her spine, scoliosis, which doctors later discovered was caused by the Chiari malformation impairing her spinal cord.
After completing an MRI, a large spinal cyst was found in Keegan as well. “She was starting to lose control of her bladder and having horrible headaches,” Lori said.
By the time Keegan went into surgery, her scoliosis had worsened to a 36 degree curvature.
Her surgery removed a small section of the back of her skull to relieve pressure and allow the brain more room. A shunt was also placed in her spine to redirect fluids.
Although the decompression surgery is not a cure and can have varying effects on patients, Shaffer said it’s made a huge difference in Keegan’s quality of life.
“Keegan today is a healthy, happy child,” Shaffer said. “I panic every time she gets a headache, but then I have to remind myself that normal people have headaches. As a parent, I’m always worried because there is no cure.”
Seven years after Keegan’s diagnosis, Shaffer is determined to raise more awareness and funding for the condition.
“There just isn’t enough research dollars and awareness out there, that’s why I do this.”
To learn more about Chiari malformation or to donate or sign up for the walk, visit www.conquerchiari.org
Reach Anna Patrick at anna.patrick@wvgazette,com or 304-348-5100.