MAUMELLE, Ark. (KTHV) - One mother and daughter are spreading awareness about a rare neurological disorder by hosting this weekend's Conquer Chiari Walk in Arkansas.
Chiari malformations are structural defects in the brain. It is a neurological disorder where the brain descends out of the skull and puts pressure on the spine.
Conquer Chiari Walk Across America is a series of fundraising walks being held across the country this month. Last year, the event took place at 85 different locations and raised over $500,000 for research.
“The biggest hurdle we have is educating doctors about Chiari and everything that comes along with it,” said Cales Cantrall.
She and her family are using their personal experience to make a difference. Cantrall first noticed that her daughter was holding the back of her head and crying a lot as an infant.
"The doctors told me it was just me being a first-time mom and being overly cautious,” she said.
But then her daughter, Ki'Nani, started having other complications. Through MRI results, doctors diagnosed her with Chiari.
“Normally your brain sits in your skull like this and the brain will protrude down here,” said Cantrall, using the palm of her hand and arm to describe what the condition looks like.
The family lived in Germany at the time of Ki’Nani’s diagnosis. After relocating to the states, they connected with a neurosurgeon at Arkansas Children’s Hospital.
“A few months had passed since her initial MRI. They did another one and two weeks later, we met with a neurosurgeon and he wanted to do perform surgery,” Cantrall added.
The condition affects more than 300,000 people in the U.S.
Cantrall started hosting the Conquer Chiari Walk here in Arkansas 6 years ago to help raise funds and awareness.
“We do have people out at the park who see us walking and want to know what’s going on," she said, "so we tell them about it. It's great to spread that awareness because not a lot of people know about it, especially doctors.”
Chiari causes symptoms like severe headaches, neck pain, balance problems and more.
The local walk is Saturday at Maumelle Park. Registration starts at 9 a.m. and the walk at 10 a.m.
There is no fee, but a $25 donation gets you a t-shirt if you choose to attend.
Pre-register online at www.conquerchiari.org.