By Cathy DeDe
Chronicle Managing Editor
Dylan McDonnell, 36, and Shane Borza, 38, are both Glens Falls High grads who likely passed in the hallways but never knew each other in school.
Today, one is here, wheelchair-bound, the other an extreme rock climber in California, but they find they have more in common than expected.
The result, if all goes according to plan, will be an “indie” documentary about living life one precarious footstep at a time. They call it Upstate Boys.
Dylan has in recent years become the public, local face of a very rare disease — Friedreich’s Ataxia (FA), a progressive neuro-muscular ailment that affects one in 50,000 people in the U.S., statistics say.
It has robbed Dylan of his mobility, his freedom, hand coordination, many of the life milestones the 1995 Glens Falls graduate might have been celebrating next year at his 20th reunion. The disease manifests for him especially in lack of balance, hand and muscular coordination. He tires easily, even during an afternoon conversation.
At age six, Dylan was diagnosed with scoliosis. He fell down a lot as a child, never mastered handwriting and suffered broken bones.
Doctors looking to diagnose him considered Lou Gehrig’s disease and muscular dystrophy. Friedreich’s Ataxia was diagnosed through DNA testing when Dylan was 18 years old.
He said he was a student at SUNY Adirondack (then Adirondack Community College), working a job and dealing with stress after his older sister died, and things had gotten significantly worse.
“I went from using a cane, to a walker, to now a wheelchair,” Dylan says.
“It’s not obvious, like for an amputee. It’s a slow realization, and acceptance. I’ve noticed very subtle changes in the past 10 years. I want to do something, I have to plan it out, whether it’s brushing my teeth, taking a shower, putting my clothes on.
“It’s little extra things I need to think about with everything. No matter how much I get used to that, it’s hard to think of everything at the same time. It does get frustrating.”
If he stops paying attention for a minute — as anyone might, he may ram into the doorjam while coming into a room. That can cost Dylan small broken bones, severe bruises that lead to infections that linger for months, things the rest of us don’t think about.
And there’s the loss of freedom adults take for granted: “Even little things, like going to the grocery store, or the gym, I have to be like a kid and ask for a ride.”
Dylan has become known locally for the annual concert he and his parents, David and Terry McDonnell, have put on since 2008. In six years, they’ve raised local awareness of FA, as well as more than $60,000 towards research through the Friedreich’s Ataxia Research Alliance (FARA).
The McDonnells’ seventh annual benefit is set for Saturday, Sept. 20, at the Elks Lodge on Cronin Road, Queensbury. Lead band is the Marcabes, fronted by Dylan’s dad Dave.
This year’s event will also be the centerpiece of a documentary planned by fellow Glens Falls grad Shane Borza, class of 1992.
Shane was only a year ahead of Dylan in school. At the time, the two lived within a couple of blocks but didn’t know each other. (The McDonnells have since built a house in Gansevoort to accommodate Dylan’s needs).
Shane lives in Los Angeles. He is an accomplished rock climber and filmmaker.
Shane’s mom, Debbie Westcott, came to know Dylan working as a tech in his cardiologist’s office.
Cardiac myopathy is a leading cause of death for people with FA, so Dylan exercises regularly on a recumbent bike and in the gym, and gets regular cardiac check-ups (all’s good, he says).
Debbie tells The Chronicle, “I wanted to do more for this person. He’s just so great. I thought, someone should do a movie about him — wait! I have Shane.”
She connected Dylan and Shane. They met each other a year ago in the spring.
Not only is a documentary now in the works, the two have become unlikely, fast friends. They share several interests: Both are tattoed (Dylan heavily so), into the same heavy hard rock bands, punk music and horror movies.
Shane’s planned movie, Upstate Boys, will highlight the two men’s similarities rather than the differences.
“We look like A and Z,” Shane told The Chronicle by phone from California. “But we’re not. Dylan says, even with all these people around him, he has to do everything on his own.
“Me, on a climbing trip, I have belayers and other people around me on the team, but every step I make, every place I put my foot, I have to do it myself.
“We are two extreme versions of the same thing. He’s in a wheelchair and lives at home. I’m a rock climber and living on the other side of the country from my parents.
“My big message is, even though he and I don’t share a lifestyle, the more I spend time with him and understand his hopes and dreams, the stuff we don’t want to deal with, our limitations, the more it has changed my perspective.”
Dylan says, “He wants to liken how I’m struggling to move forward, while he is trying to move upwards with the rock climbing.”
The two spent time together in Los Angeles when Dylan went west for an FA conference last March. Shane came east earlier this year for some pre-production work. He plans to return for two weeks in September, around the time of the fund-raising concert, to film the event, interview doctors, family members, friends.
The movie tagline: “Living in worlds where every step has severe consequences, two men, one living in a vertical environment, one struggling with a debilitating disease, cross paths unexpectedly in this story about loss, struggle and inspiration.”
Shane seeks $10,000 in backing for the movie — find info online at www.upstateboys.com. “If people can’t give money,” he says, “it would be great if some local businesses might be able to help us with feeding the crew while we’re here, renting a car or equipment. Anything can help.”
Besides the September event, several local businesses and friends organize events to help with the McDonnells’ considerable expenses and with research through FARA, including an annual golf tournament sponsored by the Bullpen, and another organized by state Supreme Court Judge David Krogmann, a High Peaks hike and more.
Contact Dave McDonnell for details: 222-1213. Friedreich’s Atazia info: www.curefa.org.
2 GF grads, 1 in wheelchair, 2nd an extreme rock climber, find connection
By Cathy DeDe