Published September 12, 2024
It’s called NF for short, this genetic disorder of the nervous system. Rare: 1 in every 2,500 births. Sufficiently rare that in the roughly three decades since his diagnosis, Joe Pardun had never even met anyone else outside his own family with neurofibromatosis.
Until, that is, a few years ago, when John Hersey High School’s assistant athletic director, math teacher and assistant football coach was introduced to then middle school student Ben Meek.
The two talked and formed a bond. They shared accounts of how they live with and manage the pain and discomfort that result from tumors capable of forming on the nerves anywhere in the body at any time.
Today, a few years later, the bond endures as Ben begins his sophomore year at Hersey and serves as a team manager for the Huskies’ varsity football squad. The two share not only a common cause under Friday night lights; this Saturday they team up as organizers, promoters and participants in the annual Shine a Light NF Walk in Palatine.
For Pardun, who long made it a point to avoid drawing attention to his NF, this is a shift of sorts. Their walk team – The Mighty Meeks – has raised over $11,000 in pledges, with a goal of $15,000. The money fuels research. That, Pardun notes, is vital in trying to make strides on a genetic disorder that has no cure and a 50-percent chance of being passed from one generation to the next.
Anyone can learn more and donate at join.ctf.org/team/586792. The walk is at Deer Grove East Forest Preserve, at Dundee and Smith Roads. Assisting in set-up for the event are numerous Hersey football players, which has provided an additional connection for Ben.
“I like interacting with the players,” Ben said. “Games are always fun; not everyone gets to be on the sideline.”
Ben’s NF has not yet required surgeries; Pardun has had more surgeries than he can easily count. Both have spent so many hours undergoing MRI scans that they’ve mastered the process.
“You’ve gotta ask for music,” they say in unison.
“I fall asleep,” Ben says.
“You do?” says Coach Pardun, clearly impressed.
While NF complicates lives in many ways, it can be monitored and is not fatal.
“How I keep it in perspective is that you’re going to go through things in life,” Pardun said. “It can always be better, and it can always be worse. If we complain we have it too hard, there are a lot of people who have it harder than us. Part of life is just things you go through. I truly believe if the mind is strong, you can get through whatever it is. We just have to fight it out.”
