Matt Condon, a second-year Atmospheric Science student from Massachusetts, is making changes in the state of Vermont in honor of his family. After Condon contacted VT Governor Phil Scott’s Office, Scott published a proclamation on October 7 stating that Friday, October 9, 2020 would be recognized in the state as PANDAS/PANS Awareness Day.
Condon’s cousin, Jaxon, was diagnosed with PANDAS, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, when he was in third grade. When Jaxon got a strep infection, rather than being cured of the infection, it moved into his brain. Before the infection, Condon describes Jaxon as a very bright kid. “He read above his grade level, and he was an incredible, detailed artist,” he recalled. As the infection attacked his brain, Jaxon could no longer write his own name or partake in his school assignments.
PANDAS/PANS is not well-known by the general public and Condon says it’s not well-known in the medical field, either. “When getting Jaxon diagnosed, it was multiple visits to multiple doctors.” Doctors in the Boston area, a place renowned for its medical care, had no explanation for what was happening to Jaxon. Tufts Medical Center in Boston was finally able to give Condon’s family answers over a year later.
Massachusetts has an annual proclamation that recognizes October 9 as PANDAS/PANS Awareness Day to help educate the community. As it was important to him and his family, Condon thought he would help raise awareness in the state of Vermont by asking Governor Phil Scott to also issue a proclamation. “It was honestly super easy; it wasn’t as difficult as I thought it was going to be,” Condon admitted. “[The Governor’s Office was] really helpful.”
He went to the Governor’s website and requested a proclamation. The Vermont State Workforce Development Board Deputy Director, Sophia Yager, emailed Condon back saying that the Department of Health reviewed his request and noted some incorrect statements. With the help of the PANDAS Network, a non-profit organization, Condon tried again and got another email from the Governor’s Office. This time, however, a proclamation signed by Governor Scott was attached. “It came down to the wire, but it happened,” Condon said. “I didn’t think it was going to happen, but then it came through in my email and I’m like ‘Yes!'”
The accomplishment of getting a proclamation issued meant a lot to Condon and his family. In February 2020, Jaxon, his sister, his mother Julie, and his grandmother were killed in a car accident on vacation at Disney World. “Getting the PANDAS/PANS day was, for my family, more than just raising awareness for the disease. Me doing it was also a way to honor Jaxon and honor my aunt,” Condon said. “Getting the proclamation felt good because my aunt fought really hard for Jaxon. It’s just a way of honoring Jaxon’s fight but also honoring the work she did to fight for Jaxon.”
Throughout this process, Condon not only discovered how much PANDAS/PANS awareness meant to him but also the greater community of Vermont. PANDAS/PANS affects 162,000 children in the United States alone, including other Vermonters. Condon told The Critic that a mother in the Burlington area reached out to him privately following the proclamation, thanking him for fighting for the community.
“I definitely want to continue to try and raise awareness. I’m just not sure what that looks like yet. I got the proclamation for Vermont, so now it’s finding what the next thing would be.” – Matt Condon
Condon wants others to stand up for causes that mean a lot to them, too. If there’s a cause that they think deserves state recognition, Condon says to go for it. “The worst they’ll say is ‘no;’ the worst, it doesn’t happen.”
Feature Photo provided by Matt Condon || Matt (left) and his cousin Jaxon (right).