12-Year-Old Collinsville Girl Hospitalized For Months Due To Rare Brain Disease

Thursday, June 30th 2022, 6:03 pm


A Collinsville girl is out of the hospital after being hospitalized for months, battling a rare disease where her immune system attacks her brain.

The 12-year-old's family said she's not the same, and she has a long fight ahead of her.

“It’s going to take time for her to get back to normal," said Rosemary Johnson.

Anyiah Johnson, 12, loves animals, playing basketball and spending time with her friends and family. But she's no longer able to do many of those things.

“She's moody. A lot of things she does, she doesn't realize she's doing it," said Clyde Johnson.

A few months ago, Anyiah had a seizure and doctors diagnosed her with with a disease called autoimmune encephalitis, or "brain on fire."

It means she occasionally loses control of her brain and causes her to have angry and emotional episodes.

Parents Rosemary and Clyde said she doesn’t remember most of her 79-day stay in the hospital.

She's out of the hospital but still battling the disease.

“I think the hardest part is bringing a child home that we took to the hospital, and she's not the same. She's not the same and people don't see that," Rosemary said.

Rosemary said things got even worse when they realized Clyde’s car had been stolen. Then a week before coming home, they discovered their house had flooded.

"You think with your kid sick for months in the ICU, it couldn't get worse than that," said Rosemary. "God has gotten us through a lot.”

The family hasn’t given up thanks to people in their community helping daily with prayers, food and donations.

Anyiah’s basketball team organized a fundraiser for them to help with more than $1 million in medical expenses.

They hope Anyiah continues to improve.

"Collinsville, the town has been amazing," said Clyde.

Rosemary said Anyiah has a chance of relapsing and has many more treatments to go before she might be normal again.

Her family is staying in a hotel and hope to move back into their home soon. 

Click here to donate to the family's GoFundMe.