Doctors said my teen was stressed — she has stiff person syndrome like Céline Dion

Following a jaw surgery last January, Lindsey Sutherland’s daughter Ayli Dunk, 14, seemed like a different person. 

She had difficulty walking, talking and could barely recognize her own family, Sutherland, 37, told People.

When Dunk’s breathing became unstable, causing her to pass out, she went for a CT scan. However, it showed no signs of brain injury.

Doctors dismissed the glaring red flags simply as stress from the operation. 

But things got worse.

“She could no longer do her ABCs. She couldn’t count. She’s 14 years old. She was a straight-A student. That is how bad she was getting,” Sutherland, a native of Shiloh, Illinois, told the magazine. 

Dunk’s symptoms were hard to ignore. She had seizures — as many as 42 in one day — but that still wasn’t enough to get doctors’ attention. 

“I’d stay up, because I was scared that something was going to happen in my sleep and I wouldn’t wake up again,” Dunk said.

“They would admit her [into the hospital] and then they would just send her home,” Sutherland said.

So, the mom took matters into her own hands and documented her daughter’s symptoms on camera.

Last August, she brought Dunk to New York to see pediatric neurologist Dr. Juliann Paolicchi, who diagnosed her teenage daughter with autoimmune encephalitis — a brain swelling that resulted from an autoimmune response to anesthesia she received during her surgery.

Paolicchi prescribed the teen a steroid treatment that helped her pain subside and left her conversing normally again.

Later that summer, however, after contracting COVID-19, Dunk began experiencing cramping, a result of stiff person syndrome, a rare and progressive neurological disorder.

In addition to the cramping, symptoms of the condition include muscle spasms, stiff muscles in the torso, arms and legs, and a sensitivity to noise, touch and emotional distress, according to the National Institute for Neurological Disorders and Stroke.

Dunk’s stiff person syndrome was likely caused by the autoimmune encephalitis, Paolicchi determined.

Last year, music icon Céline Dion also revealed she suffers from the disorder, which can result in the inability to move in some cases. The 55-year-old musician had to cancel her shows.

If left untreated, stiff person syndrome, which reportedly affects one to two people in a million, can impair a person’s ability to walk and carry out routine daily tasks.

Dunk was prescribed monthly IV immunotherapy treatments and is slated to return to school in the fall. Still, it’s unclear how life with the medical condition will progress long term.

“There are people who go into a form of remission and they do very well, and then their immune systems can be reactivated and they might need more therapy. That happened to Ayli. She responded well to steroids and then got another infection and really had worsening symptoms,” Paolicchi told People.

Sutherland, meanwhile, hopes her videos documenting her daughter’s symptoms will help parents dealing with doctors reluctant to take action when warning signs arise. 

“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,” she said.