Collinsville parents raise awareness for daughter’s rare brain disease

COLLINSVILLE, Okla. — Collinsville parents Rosemary and Clyde Johnson are trying to educate the public on rare illnesses as their daughter fights a rare disease known as “brain on fire.”

Anyiah Johnson was diagnosed with an illness called autoimmune encephalitis — more commonly known as “brain on fire.”

The day Anyiah was first impacted by her illness was like any other day for the 12-year-old. She loves taking selfies, playing basketball with her friends and spending time with her family.

“It was a normal day,” Rosemary Johnson said. “She went to train for basketball that morning, and she had a seizure that evening around 3:30 [p.m.].″

Anyiah went from playing on the basketball court to a hospital bed in just a matter of hours.

After her seizure, Anyiah’s family noticed some stark differences in her personality, and no one could really explain why.

“She wasn’t herself. She’s a sweet, kind, caring kid, and [then] she was angry,” Rosemary recalled. “She was doing things that are not normal. She was self injurious, she was hurting herself.”

She continued, “She was beginning to start hurting us, like punching us and hitting us. And she would never do anything like that on a normal day. And the screaming and crying … just an emotional rollercoaster.”

After more hospital visits, the family said doctors started to think she needed help from mental health experts because she was lashing out and self harming.

Her mother knew there was more to it than that.

“With no incidents before she’s never shown anxiety depression anything of that nature before this,” Rosemary said. “We felt seriously something was wrong with her brain.”

Then the doctors discovered Anyiah was suffering from inflammation on her brain, and she was diagnosed with autoimmune encephalitis.

Along with the painful, burning sensation on Anyiah’s brain, autoimmune encephalitis causes the brain to attack itself and can lead to angry or emotional outbursts.

Rosemary told FOX23 she wants more people to know about the disease so other people don’t get misdiagnosed.

The International Autoimmune Encephalitis Society reported there are around 5 to 8 cases per 1,000 people.

Even though the disease is rare, Rosemary explained she had heard of it before, because she saw a movie about it called Brain on Fire. She said she never thought it would happen to her family though.

“The movie Brain on Fire, I watched that several years ago,” Rosemary said. “When you see a movie like that though you don’t think of how close that can be to affect somebody, and it’s just a movie. Now we’re living that nightmare.”

Rosemary and Clyde also have two other daughters — Heaven and Rae Johnson.

They told FOX23 the Collinsville community have been rallying round supporting them. As they’re now spending all their time at Anyiah’s bedside in Oklahoma Children’s hospital in Oklahoma City.

“Our community has helped us tremendously,” Clyde Johnson said. “Taking care of our lawn, taking out our trash, anything they can do to help … it’s amazing the love that we have gotten from everyone.”

A GoFundMe has been set up to help the family with their bills and medical expenses.

Rosemary and Clyde say any help they can get is vital for them at the moment.