COLLINSVILLE, Okla. – Collinsville parents Rosemary and Clyde Johnson try to educate the public about rare diseases as their daughter battles a rare disease known as ‘brain on fire’.
Anyiah Johnson has been diagnosed with a condition called autoimmune encephalitis – more commonly known as ‘brain on fire’.
The day Anyiah was first affected by her illness was like any other day for the 12-year-old girl. 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 basketball practice that morning, and she had a seizure that night around 3:30 p.m. [p.m.].″
Anyiah went from the basketball court to a hospital bed in just a few hours.
After her breakdown, Anyiah’s family noticed stark differences in her personality, and no one could quite explain why.
“She wasn’t herself. She is a sweet, kind and caring child, and [then] she was angry,” Rosemary recalled. “She was doing things that are not normal. She was self-harming, she was hurting herself.
She continued, “She was starting to hurt us, like punching and hitting us. And she would never do anything like that on a normal day. And the screaming and crying… just an emotional roller coaster.
After several hospital visits, the family said doctors began to think she needed help from mental health experts because she was going on a rampage and self-harming.
His mother knew there was more to it.
“With no prior incidents she never showed anxious depression anything of that nature before this,” Rosemary said. “We seriously felt that something was wrong with his brain.”
Then doctors discovered that Anyiah was suffering from brain inflammation and she was diagnosed with autoimmune encephalitis.
In addition to the painful, burning sensation on Anyiah’s brain, autoimmune encephalitis causes the brain to attack and can lead to outbursts of anger or emotion.
Rosemary told FOX23 that she wants more people to know about the disease so other people aren’t misdiagnosed.
The International Autoimmune Encephalitis Society has reported that there are approximately 5 to 8 cases per 1,000 people.
Although the disease is rare, Rosemary explained that she had heard of it before, having seen a movie about it called Brain on Fire. She said she never thought this would happen to her family.
“The movie Brain on Fire, I watched that many years ago,” Rosemary said. “When you see a movie like this, you don’t think how much it can affect someone, and it’s just a movie. Now we’re living this nightmare.
Rosemary and Clyde also have two other daughters, Heaven and Rae Johnson.
They told FOX23 that the Collinsville community has stepped up to support them. As they now spend all of their time by Anyiah’s bedside at Oklahoma Children’s Hospital in Oklahoma City.
“Our community has helped us tremendously,” said Clyde Johnson. “Taking care of our lawn, taking out our trash, anything they can do to help…it’s amazing the love we’ve received from everyone.”
A GoFundMe was created to help the family with their bills and medical expenses.
Rosemary and Clyde say any help they can get is vital to them right now.
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