Athletic, coordinated, confident. That’s how Joy would describe her 5-year-old son Aroon, who loved to emulate ninjas with feisty kicks and had been scouted as a model.
But suddenly Aroon was tripping down stairs and wobbling like a newborn fawn when he walked. Aroon’s primary doctor near their Stockton home said the kindergartner seemed fine.
“But my mommy instinct knew he wasn’t,” Joy says.
Test after test failed to explain Aroon’s confusing symptoms, which gradually became more acute. Aroon began to erupt in violent tantrums: flailing wildly, pulling his hair, holding his breath until he turned blue.
“Mom, I’m so sorry,” Joy recalls Aroon explaining. “There is something inside of me that I can’t control.”
That’s when Joy brought Aroon to UCSF Benioff Children's Hospital Oakland. He was diagnosed with anti-NMDA receptor encephalitis, a rare disease that causes the immune system to attack parts of the brain that control judgment, perception of reality, memory, and basic functions like breathing and swallowing.
During the nearly one year Aroon spent in the hospital, his condition deteriorated to the point that he became unable to move and could communicate only by blinking. With each victory seemed to come a setback. Aroon would regain some abilities only to lose them again, slipping further away.
One constant in Aroon’s life was art. At UCSF Benioff Oakland, child life specialists and artists-in-residence work with patients to support their healing through creative expression.
“That team played such an important role in his recovery,” Joy says. “Consistently doing art was crucial. No matter how severe Aroon’s condition, the staff got creative and found a way to make art with him.”
An adaptive device that extended the length of a regular paintbrush, for example, allowed Aroon to create art with just small movements of his fingertips.
Aroon’s caregivers were also a vital part of the family’s journey. Nurses blasted music and sang with Aroon, celebrated his birthday, and even took care of his younger brother so Joy could rest.
“I had nights when I just cried and cried,” Joy says. “The staff was so supportive. They became like family.”
Through diligent daily therapies, the compassionate care of his multidisciplinary medical team, and the unwavering support of his family, Aroon eventually became well enough to return home.
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Aroon is now thriving back at home with his family.
Now 7, Aroon continues weekly treatments, but his physical and cognitive recovery is nearly complete. He’s getting back into karate and, Joy hopes, his modeling career. The family plans to raise awareness about Aroon’s puzzling condition by publishing a children’s book explaining the disease and selling clothing featuring art Aroon made in the hospital.
“Aroon is a light wherever he goes,” Joy says. “He has such a big heart, especially after everything that’s happened to him. We can’t believe his recovery, and we’re so thankful.”