В городе Уэйк-Форест объявлен месяц осведомленности о ПАНС и ПАНДАС в честь 22-летнего Джая Джей Уилсона

Jay Jay Wilson has spent nearly his whole life fighting something most people have never heard of. He has also spent nearly all of it smiling. For 12 years now, the town of Wake Forest has set aside October in his honor, recognizing PANS and PANDAS Awareness Month on behalf of a young man whose family has turned a diagnosis into a mission. Jay Jay, who turns 22 in November, was diagnosed as a child with PANS and PANDAS, autoimmune conditions that can cause sudden and severe neurological and psychiatric symptoms. He is developmentally delayed and cannot address the room himself, so his mother, Melissa Wilson, made a video. The plan is to play it at this year's proclamation. "That's JJ's voice and it needs to be heard, because he can't get up there and speak like the rest of us can," she said. "His awareness video is his story. It's his journey, and it needs to be heard, because it was made to help other people." Ask his mother what keeps people coming back to her son's cause, and she does not talk about the medicine. "It's almost like once you meet JJ, you can't leave," Wilson said. "You can't turn away from him. He draws you in, and you just feel like you have to help him." As for what drives Jay Jay, Melissa says he embodies a sense of hope and perseverance that is palpable to those who meet him. "I think his purpose is to help as many people as possible," she said. "He really enjoys being around everyone, and he really enjoys making people laugh. His purpose is so nobody else has to go through what he has gone through. He just keeps fighting, and he's always smiling no matter what he goes through." The proclamation started with a phone call in 2014 that the family did not expect anyone to answer. Wilson found then-Mayor Vivian Jones' number and dialed it. "She literally answered, and she said we'll give him a proclamation for the town of Wake Forest to honor October as PANDAS Awareness Month," Wilson said. Jones read the proclamation every year after that. This will be the first under Mayor Ben Clapsaddle. Jones plans to attend anyway and stand with the family. What has changed most in 12 years, Wilson said, is how many neighbors turn out to be dealing with the same thing. Last October, when town hall was lit green for Jay Jay and posted a photo, her inbox filled up. "They were like, we didn't know that so many people that live here have PANDAS or PANS," she said. "And I'm like, yeah, I didn't know either. I didn't know there were that many right in our own hometown." She started a Wake Forest Facebook group for local families a few months ago. It has roughly 50 members. More pediatricians recognize the conditions now, she said, which means more children get diagnosed instead of going untreated. Insurance has not moved as much. Intravenous immunoglobulin therapy, a primary treatment, runs $30,000 to $50,000 per treatment, Wilson said, and appointments with PANDAS specialists come out of pocket at $1,000 to $2,000 each. "If you can't get insurance to cover the medication, you can't get treatment, and you can't get help," she said. Jay Jay's care is covered because testing documented autoimmune encephalitis, a type of brain inflammation. Most children with PANS and PANDAS have it, Wilson said, but proving it requires testing during a flare, when a child is least able to sit for one. Which is the part she wants people to understand, more than the numbers. "Even if there are a million people in your circle, you still feel alone, because you have to deal with this by yourself," Wilson said. "I just want people to know they're not alone." The line on Jay Jay's page has not changed in 12 years. "The greatest lever for change is awareness," she said.