Originally aired on ABC 10 - April 24, 2023
STOCKTON, Calif. — A Stockton fourth grader is battling a disease not many people know about. NMDA Receptor Encephalitis is an attack on cells regulating brain function.
It was first discovered less than 20 years ago and it's so rare research shows only 1 out of every 1.5 million people are diagnosed.
Five years ago, Aroon’s life looked very different. His mom, Joy Van, says she first noticed he was having trouble with depth perception and walking.
“I started asking him certain questions and he would blank out. He had that blank stare in his eyes and I was like, 'OK, there's something that's going on.' I took him to the doctor and they said nothing was wrong. I was like, 'No, my mother's intuition tells me there's something that's wrong with my child,'" said Van.
More doctors’ visits and treatments would lead to a worsening of his symptoms. Van says he experienced facial drooping and extreme aggression to the point where he would try to harm himself and others. At one point, Aroon told her he felt like there was a ninja inside of him he couldn’t control.
“For him to be 5-years-old at the time and articulate that... that was huge for us. We were like, 'OK, he's telling us there's something inside of him that he can't control.' So, we're like, 'It's time to go ahead and take him back to the hospital,'" said Van.
He would develop Dystonia and spend a year there. Van says doctors told her it was the worst case of the disease they had seen.
“He actually lost his ability to walk, talk and eat. A feeding tube was placed. He was basically on his deathbed,” said Van. “They had to put him in a posey bed. We had to lock him up because he was being so aggressive and attacking everybody. Being in the hospital for that long and staying by his side that long, it was very heartbreaking as a mom."
ABC10 Health Expert Dr. Sristi Sharma explained how NMDA Receptor Encephalitis happens. NMDA Receptors are on the cells in your nervous system that help regulate brain signals. That could mean memory, human interaction, brain function and more unconscious functions like breathing and heart rate. The body starts producing antibodies against the receptors. She says no one knows why this happens and there’s no specific age range where it can occur.
"You will never go back to baseline depending on what part of your nervous system has been affected, but eventually you will go back to some degree of normalcy. Having said that, those who are affected do have long term consequences. It is serious,” said Sharma.
While Aroon was in the hospital, Van enrolled him in California Virtual Academies. Speech and occupational therapists would come in and work with him. Van asked his art therapist if she had extra craft items she could use to keep her mind busy. She created a book titled “The Ninja Inside Me.”
Each emotion Aroon was feeling was translated into a weapon a ninja trains with. As she crafted the book, she would ask Aroon for his input, eventually helping him in his recovery.
“He couldn't verbally communicate, he would move his eyes to the left or to the right, or he would squeeze my finger with yes or no,” said Van. “But they said due to me doing what I did with him, with the colors and the shapes, and keeping his mind occupied with the actual book, it actually helped him with his memory because he didn't lose any of his memory.”
Van says she decided to publish her book because there are no resources, no support groups and no answers to the disease. She wants others to have an idea of what it looks like.
Today, Aroon is doing much better. Van says he still has daily struggles, but he enjoys things like Legos, cooking and crafting. She says NMDA Receptor Encephalitis is something her family has just had to embrace.
To learn more about California Virtual Academies, visit https://cava.k12.com/.
