Parents of four daughters diagnosed with same rare brain condition reveal 'strange symptoms'
A mother has revealed how four of her children were diagnosed with the same rare brain condition.
Paul and Ashlee Higginbotham, from West Virginia, have six children and, as such, have had more than their fair share of all the trials and tribulations that come with raising a large family.
Being as experienced as they are, the pair knew when something was wrong or when one of their kids was behaving out of character.
So when their youngest daughter Austyn began to act strangely, Ashlee quickly became worried, saying that she was 'just not happy' and 'never content'.
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Ashlee shared that Austyn also had a tremor, as well as some mild developmental delays.
The concerned parents took her for some genetic testing and the results left them shocked.
Genetic testing at 18 months old confirmed that Austyn had Chiari malformation - a health condition which affects about one in every 2,000 people but does not have a clear cause.
Dr David Harter, director of pediatric neurosurgery at NYU Langone, explained that it happens when the brain's lower part doesn't fit properly into the skull.
This means that it protrudes out of the opening where the skull and spinal cord connect.
"That moment 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," Ashlee told CBS News.
She added: "Life doesn't stop. We had five other kids, their lives were still moving, and we were trying to hold it together but we're terrified.
"We were traveling three and a half hours away for MRIs, for blood work, for all these different specialists. Now we need brain surgery? Life was chaos."
Fortunately, Austyn was able to undergo surgery in March 2023, but then her sibling, Amelia, who was three at the time, began to show symptoms of Lyme disease.
Imaging found that Amelia also needed treatment for the Chiari malformation and she recovered quickly after her operations in October 2023.
However, her sister, seven-year-old Aubrey, then started showing symptoms, experiencing low moods and regular urinary tract infections.
Ashlee said: "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'.
"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."
Aubrey was diagnosed with both Chiari malformation and a tethered spinal cord, undergoing surgery in November 2023.
Finally, Adalee, who was 11 at the time, had leg pain which had worsened to the point she couldn't even get out of bed.
Her mom and dad took her for imaging which revealed the same issues as her younger sisters - Chiari malformation and a tethered spinal cord.
'It's been a whirlwind'
"It was such a blur of 'You've got to be kidding,'" Ashlee said. "You hear of people having one or two kids, but four?"
Adalee has since recovered from her March 2025 procedure and joined her school's dance team.
Fortunately, after being treated for the condition, all four girls, Austyn, four, Amelia, six, Aubrey, nine, and Adalee, 12, are now active and happy.
Ashlee added: "Some days we weren't sure how things would ever get better for our girls ... It's been a whirlwind, but we're thankful we are where we are today."
Kit Roberts