Billy Hickox, recovering from rare disease, gives back

In 2023, during his third year at Bryant University in Rhode Island, Billy Hickox contracted a fever. What the Mattituck graduate initially thought might be COVID turned out to be something much more serious. Within 24 hours, he lost vision in both eyes and was paralyzed from the waist down. 

“They figured out that I have a disease called acute transverse myelitis. My body was attacking neurological paths in my body, and I had lesions growing on my spine and on my brain that destroyed a lot of neurological pathways. It’s something that is pretty uncommon, actually. It’s like 1,000 cases a year or so. The transition from, being totally fine, and then a week later, I was in a coma and all these things were going on, it was a drastic life change,” Mr. Hickox said.

Fortunately, Mr. Hickox has made a partial recovery. He spent time in both the hospital and a rehabilitation facility in White Plains before returning to Long Island. Because of all the upheaval the family was undergoing, many friends and community members wanted to help out.

“As I was slowly getting to the point of, ‘Okay, you’re good enough to go home,’ a lot of my friends wanted to do something to help my family and I,” said Mr. Hickox. “They held the first volleyball competition, Billy’s Will-Power Volleyball Tournament, at Breakwater Beach last year.”

The tournament ended up being larger than anyone expected, with around 500 people attending. Seeing all of the people from his hometown come out in support of him and his family was very moving for Mr. Hickox.

“The outpouring of help and love from the community is something that has helped my spirit, because this is one of those things where you kind of feel alone when you have something that is so rare,” he said. “You’re in the hospital so much; you’re not with family and friends; and to come back from the rehab to the outstretching warmth of the community was amazing.”

This year, the Hickox family decided to hold the fundraiser again. This time, though, the proceeds will go to the newly formed Will Power Trust, allowing them to help people in the community and elsewhere. Set for Saturday, Aug. 10, from 9 a.m. to 5 p.m. at Breakwater Beach, the event will include food trucks, live music, raffles, a chinese auction and a bake sale in addition to the volleyball tournament. 

“Something that we really want to do is give back to the community. Other people may have things going on in their lives that they didn’t expect, where they need support, and we can support them in an emotional and monetary way,” Mr. Hickox said. “We also plan to donate to certain research facilities so that we can better understand what has happened and help other people that this may happen to in the future.”

For his part, Mr. Hickox has regained sight in one eye and partial sight in the other. He has experienced some setbacks but is hopeful for his future overall. “ [I picture] being able to give myself independence, to go out on my own, go back to school, to get a job,” he said. “I was going to school before this, and I’d like to finish that. I was going for management, and I’d like to use that to create a community where we can manage these things and find other ways to help other people.”