It was supposed to be fun: a Tae Kwon Do class for 7-year-olds, meeting twice a week.
But for Brigid, Kristina Jorgensen Harrigan’s young daughter, the experience was miserable.
“She would come home crying that it was too loud in the gym and that she felt really hot afterward,” Harrigan remembers. “That was how she described the headaches she was getting.”
She didn’t realize it then but Harrigan, a mother of four from Louisville, Ky., says she now knows that those headaches and other health problems facing her daughter, including speech difficulties, were caused by a little known neurological condition called a Chiari Malformation — a disorder in which part of the brain descends out of the skull. This structural defect can block the flow of cerebrospinal fluid that cushions the brain and the spinal cord.
Brigid, now 11, had to undergo two separate surgeries to remove parts of her skull and suffered serious complications afterward, including a mild stroke. Not long before Brigid’s first surgery, one of her sisters — Brigid is a triplet — was also diagnosed with a Chiari Malformation but her condition doesn’t yet require treatment.
“We are keeping our fingers crossed that this will be it as far as surgeries go,” Harrigan said. “Unfortunately there is no guarantee.”
Estimated to affect at least one in a thousand people, Chiari Malformations are often congenital, though diagnoses of the condition typically don’t happen until years or even decades after birth. The condition is more common than the neurodegenerative disease ALS and with ALS awareness at an all-time high thanks to this summer’s wildly successful ALS Ice Bucket Challenge, those suffering from Chiari Malformations and their families hope the spotlight will widen to include other neurological disorders like Chiari.
On Sept. 20, thousands are expected to take part in the seventh annual Conquer Chiari Walk Across America to raise money for research. Organized walks are taking place in 77 locations in 41 states.
“I hope the money raised is used to make more people aware of what a Chiari is,” Harrigan said. “Even most doctors have no idea what it is or what to look for.”
Harrigan, unfortunately, has had experience with doctors clueless about Chiari Malformations. A decade ago, after she experienced severe headaches of her own, her doctor ordered an MRI.
“The only thing the doctor told me back then was that ‘my brain dipped down a bit on my spinal column but that shouldn’t be causing your headaches,'” she said.
After everything that happened with Brigid, Harrigan began to suspect that she, too, had the condition. This past summer, she received an official diagnosis — she does have a Chiari Malformation like her daughters and her symptoms have been getting worse: hand and feet tingling, difficulty swallowing, and poor balance.
“At first I was completely relieved that someone finally listened to me and I have an answer. That I’m not crazy,” Harrigan said. “Now it’s hitting pretty hard. The fear that even if I had surgery, my symptoms may never go away.”
Brigid, at least, is doing well, though she does still get occasional Chiari-related headaches and must take care to avoid certain activities, including gymnastics, diving, and contact sports.
Her daughter, Harrinan said, is an amazing kid who “handled all that pain in the most positive way possible.”
“Brigid,” she said, “is my hero.”
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