Mom Shares Emotional Video of Her Teen With Céline Dion's Disorder, Stiff Person Syndrome (Exclusive)
“Doctors told me it was stress. But when you watch the videos, you think, ‘How did they think this was normal?” says Lindsey Sutherland of her 14-year-old daughter Ayli Dunk
It took months for Lindsey Sutherland to get an answer to why her daughter, Ayli Dunk, was suffering so much.
After jaw surgery in January 2022 left Ayli "a completely different person" who walked and talked with difficulty and didn't even recognize her own family, doctors told Sutherland her daughter was just stressed from the operation.
But Ayli's symptoms continued, including seizures — 43 in one day at one point — and she was repeatedly admitted into the hospital. "They would admit her, they would do their exams and then they would just send her home," Sutherland tells PEOPLE in this week's issue. "Doctors told me it was stress. It was just functional neurological disorder."
Sutherland knew there was something more, so she began documenting Ayli's symptoms on video: "Right away when anything was happening, I'd video it. And when you watch the videos, you'd think, 'How did they think this was normal?' She could not walk, she couldn't even hold a pencil. She could no longer do her ABCs. She couldn't count. She's 14 years old. She was a straight-A student. This is how bad she was getting. I literally had to wash her in the bath. She had no quality of life."
RELATED CONTENT: Meet the Teen Living with Céline Dion's Disorder, Stiff Person Syndrome (Exclusive)
Finally last summer, she brought Ayli from their home in Shiloh, Ill., to New York to see pediatric neurologist Dr. Juliann Paolicchi of Northwell Heath. Paolicchi diagnosed Ayli with autoimmune encephalitis — essentially, says Ayli, "my immune system attacks my brain."
Paolicchi later also determined that due to her brain swelling, Ayli also suffers from Stiff Person Syndrome, which causes painful cramping and makes parts of her body freeze. It's the same disease that Celine Dion revealed that she suffers from.
RELATED CONTENT: Céline Dion Reveals Diagnosis with Rare Neurological Disease Called Stiff-Person Syndrome
Today, Ayli receives monthly IV immunotherapy treatments and plans to return to school in person next fall.
Sutherland says she hopes that sharing the emotional videos she took of her daughter can help shed light on her disease, and offer hope to other parents with children who are suffering: "I'd like to tell anyone with any rare disease or with any disease, if a doctor doesn't help, keep looking. Because if your gut is telling you something, you've got to keep helping that child."
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