Community rallies around "Courageous Cali"

DANNEMORA | In November 2022, Cali Neri, a two-year-old from the Dannemora area, was diagnosed with Powassan virus, a rare tick-borne disease. More than 1,000 people in her community, and beyond, are supporting her in any way they can. Cali's symptoms began in October. After taking her to the pediatrician and emergency room several times, doctors at CVPH didn't detect that it was Powassan virus. "There was just so much going around at the time because of the time of year it was, back to school. You kind of expected your regular viruses, flu, colds, that kind of stuff to be happening," Jessica Favaro, long-time friend of Cali's mother, Kelsey Neri, said of the early path to diagnosis. Her symptoms continued to get more severe. She was transferred to UVM Medical Center, where she was in the Pediatric Intensive Care Unit (PICU) for about 28 days. After extensive testing, Cali came back positive for Pawassan virus. "It was absolutely terrifying. Being in the ICU, and nobody being able to tell me what to expect. I mean, I was searching just the most random things but couldn't find anything," Kelsey Neri said. "It felt really lonely and scary, especially because UVM doesn't deal with this very often, encephalitis in itself, so I felt like a lot of people weren't confident, which was scary." On Dec. 9, Cali was transferred to Boston Children's Hospital. She is currently nonverbal and she can't move independently, due to encephalitis caused by the Pawassan virus. However, Kelsey Neri said she is making little gains. For example, she has started wiggling her toes and eyebrows. The doctors don't know what will stay paralyzed and what will regain movement, but Kelsey Neri is optimistic. She has found five other families who have been through this diagnosis before, through social media. All five children have learned how to walk again, three talk (one is only one and a half so she wasn't talking before she got sick) and one is nonverbal but is learning sign language and starting kindergarten. "When I think about the other families, I feel good," Neri said. "They completely opened themselves up to me and their stories and where their children were treated and I just hope I can do the same thing for the next family." Boston not only has the doctors Cali needs, but there are also many forms of therapy available to Cali there. She gets physical therapy, occupational therapy, dog therapy and the family's favorite, music therapy. "Cali calms right down and zones in to them," Neri said. Because the virus is so rare, there is not a lot of information about it and treatment is experimental. Cali's parents are constantly being told "We don't have a crystal ball." "It's hard trying to find the balance between keeping her comfortable and keeping her as alert as possible with medicine and stuff," Neri said. Instead of sending individual texts to everyone rooting for Cali at home, Neri is adamant about updating "Courageous Cali," a Facebook page she started that is dedicated to Cali updates. She said she is so open on this page "for the next mom." When an infectious disease specialist diagnosed Cali, he told them he knew nothing about the virus. She wants to make sure the next mom who goes through this has some information going into it because even the specialists are still learning. "To have an infectious disease specialists say 'I don't know' was really scary," Neri said. On Jan. 15, the page reached 1,000 followers. "It's an unexplainable amount of gratitude to see that we are just as important to our community as our community is to us," Neri said. "Of course, we will pay it forward. The information, the resources, honestly anything we can when the day comes, but we have no idea how to thank everybody else. I hope they can feel our gratitude and know how much all of this truly means to us. It's because of Cali's village we are able to stay a united family front with Cali. Because of them, we don't have to stress about going to work or coming back to a home." Favaro, along with some of Neri's other closest friends, Braquel Campion, Erica Johnson, Meagan Strack, Shannan Gillespie, Breanna Chase and Shelby Spies, is holding a fundraiser: A Family Day for Cali. The event will include a spaghetti dinner, face painting, a raffle, carnival games, a photo booth, a magician, a DJ and more. There will also be a display with information about Powassan virus and the DJ will also announce facts and preventative measures throughout the day. This event will take place on Feb. 11 at 11 a.m. at Redford Assumption of Mary School. Depending on how Cali is feeling at the time, one of her parents may attend the event, if not, they will certainly Facetime in. In addition to this event, Cali's community has raised money for her in many other ways. The Key Club at Saranac High School is doing a change drive. Zumbini with Sara did a Zumbini class that is donation-based and 100 percent of those proceeds went to Cali. The Saranac Cheerleading Squad donated money they made on a 50-50 raffle at one of their games to Cali, instead of using it for future competitions. The winner of the raffle, Bryan Caron, a local police officer, donated his entire portion to Cali as well. There is also a GoFundMe that Meagan Strack and Braquel Campion organized for Cali. The goal is set for $12,000. It has raised $11,525 so far, with 282 donors. "The home renovations we will have to make and the therapies we will have to attend between insurance battles should absolutely overwhelm me, but they don't, knowing we have all these people cheering Cali on as if she was their own child," Neri said. On Jan. 15, the Neris found out Cali will be moved over to Spaulding Rehabilitation Hospital. For more information, visit https://www.facebook.com/Courageous-Calis-life-with-encephalitis-caused-by-Powassan-Virus-100274362935439. To donate, visit https://www.gofundme.com/f/please-help-baby-cali-and-support-her-family?utm_campaign=p_lico+share-sheet&utm_medium=copy_link&utm_source=customer. ABOUT POWASSAN VIRUS Symptoms of Powassan virus can include fever, headache, vomiting and weakness. The virus can cause severe conditions like the one Cali has, encephalitis. Encephalitis is an inflammation of the brain that can cause difficulty speaking and loss of movement in parts of the body. Since there is no vaccine or medications to prevent or treat Powassan virus, the CDC suggests checking clothes and skin for ticks after being outdoors in areas where ticks may live. Ticks tend to live in areas with lots of tall grass and trees and can be as small as a poppy seed. If someone does find a tick on their outdoor exploring partner or themselves, they can send them to Upstate Medical University's tick testing lab. This is a free program that allows anyone to send a tick (dead or alive) to for testing, so they know if the tick could have infected them with anything. For more information, visit https://nyticks.org/.

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Community rallies around "Courageous Cali"

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