4 sisters diagnosed with the same extremely rare brain condition that can lead to paralysis
A West Virginian family lived through a medical nightmare after four sisters were diagnosed with the same rare brain condition that can cause paralysis.
Parents of six, Paul and Ashlee Higginbotham, thought they’d seen it all when it came to kids’ illnesses - until their youngest, Austyn, started showing strange symptoms.
From birth, she was 'just not happy' and 'never content', barely slept, never smiled, and had noticeable tremors.
At just 18 months old, genetic testing revealed the shocking reason - she developed a condition called Chiari malformation, which is a disorder that happens when part of the brain doesn’t fit properly inside the skull and pushes into the spinal canal.
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According to Dr David Harter, director of pediatric neurosurgery at NYU Langone, the condition can cause weakness, headaches, scoliosis, nerve pain, and even paralysis if untreated.
"When Austyn’s MRI results came up on my screen and we read the diagnosis of Chiari malformation - that was the moment our world was flipped upside down," mom, Ashlee, told CBS News.
Doctors found that Austyn’s brain was putting pressure on her spine and blocking spinal fluid, leading her to need brain surgery.
The Higginbothams traveled from West Virginia to New York for the procedure with pediatric neurosurgeon Dr Jeffrey Greenfield.
After surgery in March 2023, Austyn woke up transformed.
"She was smiley. It was like the pain she’d always felt was gone," Ashlee recalled. "When we did the follow-up with Dr Greenfield, I told him, 'you gave me her laugh.'"
But relief didn’t last long, as just five days later, their three-year-old daughter Amelia - who was taken to the doctor's for what they thought was Lyme disease - was diagnosed with the same condition, plus a tethered spinal cord... which meant another double surgery.
Next up, their seven-year-old, Aubrey, started acting differently - she was moody, withdrawn, and suffering urinary tract infections (UTIs).
"I remember driving down the road, and it just clicked in my head. I was like, 'oh my gosh, I need to get an order for an MRI. She needs to be checked for a tethered cord,'" Ashlee said.
"She was our happy kid, and it was like one day she woke up and was different, like a flip of a switch, and we were losing her. I wish I would have thought of it sooner."
By November 2023, three sisters had endured complex spinal and brain surgeries, and still, the family wasn’t done.
Their eldest daughter, 11-year-old Adalee, who’d battled severe leg pain for years, was diagnosed next.
"It was such a blur of, 'you’ve got to be kidding,'" Ashlee said. "You hear of people having one or two kids [with Chiari malformation], but four?"
Dr Greenfield said it’s 'unbelievably rare' for four siblings to share the same condition, as only around 10 percent of Chiari cases are genetic.
Today, the Higginbotham sisters - four-year-old Austyn, six-year-old Amelia, nine-year-old Aubrey and 12-year-old Adalee, are finally thriving.
"[Dr Greenfield] gave us our family back, and that is the most amazing gift anyone could get," Ashlee added.
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Joe Yates