College Freshman's Immune System Attacks Her Brain, Leading to Psychosis, Seizures: 'Didn't Find a Cause' (Exclusive)

Freshman year of college, 18-year-old Onyx Middleton was having headaches. The fashion major at Clark Atlanta University started missing class, and she wasn’t eating or sleeping. Her primary care physician said it was likely anxiety and stress.

“I did feel stressed,” Onyx Middleton, now 19, tells PEOPLE. “I felt like I had a weight on my shoulders.”

On February 9, 2024, her then-boyfriend dropped off Onyx at her parents’ home in Atlanta, about 30 minutes away from campus. Her mom says she wasn’t expecting Onyx, since she had been home the weekend before.

Onyx seemed fine when she arrived and talked to her mother and grandmother as she normally did. But 30 minutes later, she started crying uncontrollably and telling stories that didn’t make sense. When her mother brushed her leg, Onyx started screaming.

Her mother called an ambulance, only to see Onyx calm and smiling when the paramedics arrived to transport her to Wellstar North Fulton Medical Center in Alpharetta, Ga.

“So, I'm thinking — college student, did she take something? Did somebody give her something? Was she dealing with the wrong people at school? So, I go in her bag, and I dump everything out,” says her mother, Cherise “Reese” Middleton, 45, a graphic designer who also builds websites.

But all she found was a bottle of Tylenol and a journal where Onyx was listing ways to be a better woman.

In the emergency room, doctors told Cherise and her partner, Onyx's dad Donelle Mahomes, that Onyx might have schizophrenia. They put her on a psychiatric hold for the weekend.

Cherise was afraid and confused by the diagnosis. “Where did this come from?” she remembers asking. “I cried all weekend.”

On Monday morning, hospital staff called and told Cherise that her daughter was having seizures, so she was being transferred to Southern Regional Medical Center. Her parents rushed there.

“When we walked in, she just looked so defeated, and her body looked like she was just fighting so hard, and she was asleep,” her mother says.

Because of the seizures, her initial psychiatric diagnosis was dismissed. She spent the week in the hospital getting MRIs, CT scans, and a spinal tap to try to determine what was wrong. The seizures continued. Within days, she was intubated in the ICU.

Related: 29-Year-Old in ‘Catatonic State’ After Rare Disorder Causes Debilitating Night Terrors

On February 16, 2024, she was transferred to Children’s Healthcare of Atlanta Scottish Rite Hospital.

Six days later, on February 22, which coincidentally is World Encephalitis Day, Onyx was diagnosed with anti-NMDA receptor encephalitis (NMDARE), an autoimmune condition in which the body's immune system mistakenly attacks the brain, causing symptoms like psychosis, seizures, and breathing failure in severe cases like Onyx’s.

“The immune system is like our protection force in our body; it recognizes things that shouldn't be there, like infections and tumors," says her neurologist Dr. Varun Kannan, assistant professor of Pediatric Neurology at Emory University School of Medicine and Children’s Healthcare Atlanta. "And when it recognizes those things, it fights them and kills them."

But, he continues, "there are times when the immune system can be mistaken, and it can incorrectly identify part of the healthy body as being foreign. That can happen anywhere, but when it happens in the brain, we call it autoimmune encephalitis.”

No one expected that diagnosis.

“It's a really rare disease. It's basically one in a million,” says Dr. Kannan. “It basically rewires the brain. It can be life-threatening in severe cases like Onyx's was.”

Related: Recovering from Multiple Seizures and Autoimmune Encephalitis, Texas Boy Hopes to Go to 2nd Grade in Person

Onyx was given medication to suppress her immune system. After several weeks, her brain was eventually able to heal itself, Kannan says.

The disease is often misdiagnosed as a psychiatric disorder because of the acute onset of psychiatric symptoms. It’s a relatively newly discovered disease, her doctor explains, adding that it was first described in medical literature 18 years ago. It’s most common in women in their 20s and 30s.

Doctors did full-body scans, checking for tumors or infections that could have caused it. “We didn’t find a cause,” Kannan says.

Onyx was in the hospital for 118 days. She had to relearn how to talk, walk and eat again.

“She had some horrible days when we were in hospital. She had some great days, but she had some really bad days,” Cherise says.

She was discharged from the rehabilitation facility on June 6th, 2024.

Onyx needs more outpatient therapy, but “it’s hard,” Cherise says. She and Donnelle lost their jobs — and their home — because they stayed by Onyx's bedside while she was sick.

With the job loss, Cherise also lost her health insurance. They are in the process of applying for Medicaid. A GoFundMe has been established to help the family as they rebuild and as Onyx continues to heal.

Onyx, who used to work in retail, is also looking for a job. “I am getting back to being myself,” Onyx says. In the meantime, she is trying to rebuild her memory.

“She doesn't remember much,” Cherise says. “She's still trying to accept what happened, understand what happened. I show her videos when she allows it because she's still trying to accept seeing herself in that way. A lot of the videos, she's tubed up, IV'd up. The rehab videos are easier for her to see right now."

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Cherise is self-publishing a book and trying to raise awareness about this relatively new disease. She has connected with other families around the world.

“I'm trying to answer any questions, give support, build a support team of parents and caregivers,” her mom says. “I needed it when she was sick. I had a lot of support from family and friends. But I needed to know what somebody in that same water felt like, what their days were like."

Cherise also shares videos and photos on Onyx’s  website, Instagram and Tiktok.

One of her videos got 1.2 million views.

“It’s weird,” Onyx says of her social media presence. “But I know that it’ll help people. So it makes me feel good.”

“It was really scary for me to see my daughter go through this,” her mother says. “I wanted to share with the world how one of the most important people to me had to live though this and how scary it was. But God pulled us through, and with the right medication, with the right team, you can get through this, too.”

To other parents of kids with the same diagnosis, Onyx wants them to know: “They’re going to be okay."

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