A West Virginian family has lived through an extraordinary medical challenge after four of their daughters — aged 4, 6, 9, and 12 — were all diagnosed with the same rare brain disorder.
Paul and Ashlee Higginbotham, parents of six, were used to the ups and downs of raising children. But when their youngest, Austyn, began showing unusual symptoms, their world changed completely.
From birth, Austyn seemed “unhappy and uncomfortable,” rarely smiling and suffering from tremors. After months of searching for answers, doctors discovered she had Chiari malformation, a condition where part of the brain pushes into the spinal canal due to a small or misshapen skull.
According to the National Institute of Neurological Disorders and Stroke (NIH), Chiari malformation can cause headaches, muscle weakness, balance issues, and in severe cases, paralysis.
What Is Chiari Malformation?
Chiari malformation occurs when brain tissue extends into the spinal canal, often due to structural abnormalities in the skull.
Experts at Mayo Clinic explain that the condition can be congenital or develop later in life. Common symptoms include:
- Persistent headaches (especially after coughing or sneezing)
- Neck pain
- Poor balance or coordination
- Numbness in limbs
- Difficulty swallowing or speaking
While many cases are mild, others require surgery to relieve pressure on the brain and spinal cord.
A Series of Surgeries That Changed Everything
When Austyn’s MRI revealed her brain was pressing on her spine, she needed immediate surgery. The Higginbothams traveled from West Virginia to New York, where pediatric neurosurgeon Dr. Jeffrey Greenfield at NYU Langone performed the delicate operation.
Four-year-old Austyn, six-year-old Amelia, nine-year-old Aubrey and 12-year-old Adalee were all suffering with the same condition (Paul and Ashlee Higginbotham)
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The results were life-changing.
“She was smiley — it was like the pain she’d always felt was gone,” her mother Ashlee shared with CBS News. “When we did the follow-up, I told the doctor, ‘you gave me her laugh.’”
But just five days later, the family received more devastating news. Their three-year-old daughter, Amelia, who was being tested for possible Lyme disease, was diagnosed with the same condition — plus a tethered spinal cord, meaning her spinal cord was abnormally attached inside the spine. She too underwent surgery soon after.
More Diagnoses Follow: Aubrey and Adalee
When their seven-year-old daughter Aubrey began showing mood changes and recurring urinary tract infections, Ashlee recognized the signs.
“I just knew it,” she recalled. “I asked for an MRI — and sure enough, it was another Chiari diagnosis.”
Finally, their eldest, Adalee, 11 at the time, who had battled chronic leg pain for years, was also diagnosed with Chiari malformation.
Dr. Greenfield described the occurrence of four siblings sharing this condition as “unbelievably rare.”
According to research published by the National Center for Biotechnology Information (NCBI), only around 10% of Chiari cases are genetic.
Finding Hope and Healing
By the end of 2023, all four Higginbotham sisters had undergone complex brain and spinal surgeries. Remarkably, they are now thriving.
Pediatric neurosurgeon Dr Jeffrey Greenfield with Aubrey (Paul and Ashlee Higginbotham)
“[Dr. Greenfield] gave us our family back,” Ashlee said. “That’s the most amazing gift anyone could ever get.”
Today, the sisters — Austyn (4), Amelia (6), Aubrey (9), and Adalee (12) — are back home in West Virginia, living active and joyful lives. Their story serves as a reminder of the importance of early diagnosis, genetic testing, and specialized pediatric care.
What Parents Should Know About Chiari Malformation
While Chiari malformation is rare, awareness can make a difference. Experts at the Cleveland Clinic suggest parents seek medical attention if children experience:
- Chronic headaches or neck pain
- Loss of balance or coordination
- Unexplained weakness or numbness
- Sleep disturbances or changes in behavior
Timely imaging tests such as MRI scans can help detect the condition early, potentially preventing long-term neurological damage.
Related Articles on Viralsensei.com
- Boy’s Rare Genetic Condition Leads to Remarkable Recovery After Surgery
- Mom Discovers Daughter’s Seizures Were Caused by a Hidden Brain Disorder
- How Genetic Testing Is Changing Pediatric Medicine
- Family Overcomes Odds After Triplets Diagnosed with Rare Disease
- Experts Explain Why Early Diagnosis Saves Lives in Pediatric Neurology
External Expert Sources
- National Institutes of Health (NIH)
- Mayo Clinic
- Cleveland Clinic
- Centers for Disease Control and Prevention (CDC)
- National Organization for Rare Disorders (NORD)
Disclaimer: This article is for informational purposes only and does not constitute professional medical advice. Always consult a qualified healthcare provider regarding any questions about a medical condition.
