Matt “Dezy” DiStefano wakes up each morning at 4:45. The kidney cancer he said he was diagnosed with in February hasn’t hampered his ability to attack each day as it comes. As a former high-level athlete and a Sachem Sports Hall of Famer, DiStefano is used to the grind.
“When I found out I had the cancer, it was Feb. 25 at 4:45 in the afternoon, so I set my alarm in the morning at 4:45 as like, that’s my reminder,” DiStefano, 41, said Monday at Mill Pond Golf Course in Medford. “When my alarm goes off, when that time was one of the worst moments of my life, I tell myself, ‘I get to go to the gym. I get to see my wife and hug my kids today.’ ”
Later Monday evening, DiStefano addressed an audience of nearly 400 — many of them without seats in the packed house at Mill Pond, which hosted the first Dezy Classic golf outing that day — as he announced that the Dezy Strong Foundation would be created to help families impacted by cancer.
DiStefano — a 1996 Sachem graduate who is a special education teacher and assistant boys volleyball coach at Sachem North High School in Ronkonkoma — said he didn’t want any of the $85,000 raised at the fundraiser.
“Everyone really thinks this is a fundraiser for my family and I came here and I’m putting a twist in it,” he said. “I don’t want the money. I don’t need the money. I want to start a foundation to help other families.”
As an assistant coach, DiStefano has helped lead Sachem North to the 2014 state championship, three Long Island championships and three Suffolk County championships.
Matt Grace, a Holbrook native who graduated from Sachem North in 2016, was present Monday.
“His competitiveness and his leadership were always inspirational things for me,” said Grace, who plays volleyball at SUNY New Paltz. “As I’ve gotten to know him, I’ve looked up to him more as a man, as a role model for life.
“There’s no bigger competitor that I know than Dezy. Every day, he wakes up and doesn’t complain about anything. He just goes to fight, and he’s not going to lose. He’s won his whole life, on every level of competition, and he’s going to win this, too.”
Matt Rivera, Sachem North’s head volleyball coach, said “20 or 30 of our former players were in the room. He has a way of creating relationships with our players that transcend their time as Sachem volleyball players.”
DiStefano began treatment for his cancer on March 14. He said his form of cancer doesn’t have a high-percentage chance for survival.
“When I found out, it was just like, ‘Why? How?’ ” said his wife Jennifer, 38, a physical education teacher at Sachem North who married Matt in 2009.
Jennifer said she was diagnosed with thyroid cancer in 2006 and has been cancer-free for over 10 years. “We’re in perfectly healthy shape. We don’t smoke. We don’t drink. It’s crazy.”
Every other Thursday, he goes to Memorial Sloan Kettering Cancer Center in Manhattan, where he is given an experimental combination of two drugs that are FDA approved separately, but not together. It costs about $42,000 a month, he said, but “thankfully, it’s covered by insurance.”
At his three-month checkup, he said his tumors had shrunk. He said the treatment will continue as long as it remains effective. In the meantime, he’ll continue to focus on helping those who don’t have access to the same insurance.
“I’m going to try and hold two or three events a year,” said DiStefano, who said he is on long-term disability but still acts as a volunteer coach. “This will be the biggest one every year. We’ll do different stuff and bring in different celebrities. That’s my vision. Part of the purpose in my life now is to help people.”
Four-time Stanley Cup champion and Islanders legend Clark Gillies and Olympic gold medalist speed skater Dan Jansen played in the golf event and supported the newborn foundation. Both athletes are friends of Commack’s Kris Amplo, one of DiStefano’s best friends and an event organizer.
“He is a true inspiration,” Gillies said during the round. “He’s sick, and he’s not letting it get him down. I’ve watched a couple of his videos, and I’ve actually got very inspired myself. I had prostate cancer a couple years ago, so I know what cancer is about.”
Jansen, who famously competed in the 1988 Winter Olympics in Calgary the same day his sister died from leukemia, marveled at DiStefano’s unselfishness.
“I feel like we’re here for him, but he feels like we’re here for anyone who might be in his position,” Jansen said. “He’s a special guy.”
The event, organized by Amplo and Oakdale’s Rick Cole, featured auctions, raffles and a video “roast” of DiStefano that opened the evening. Friends and family laughed as they recalled DiStefano’s failed audition to be on the reality show Survivor and how he’s known for having won an accolade for best smile in his graduating class.
They poked fun at his social media, a place where he often posts videos of his kids — Gianna, 8, Giuliana, 6, and Giovanni, 4 — and his workouts. He goes to the gym at 5 a.m. and 10 a.m. each day.
“With all this cancer in my body, I feel the healthiest I’ve ever been at 41 years old,” said DiStefano, who eats an organic diet and has changed the alkalinity of the water in his Ronkonkoma home. He said he’s lost 30 pounds since his diagnosis.
“I’ve seen him compete and overachieve in ways that will serve him and us very well now,” said Cole, the director of athletics at Hofstra University who has known DiStefano for over 20 years.
“This isn’t something that Dezy wanted to do,” Cole said as he addressed the crowded room. “His initial reaction was, ‘No. I’m good.’ If you know Dezy, in the world you have givers and takers. He’s not a taker. He’s a giver by every stretch. He’s generous to a fault.”
He was a giver on Monday, handing out checks to help pick up individuals and families impacted by cancer. Then, when he began his closing remarks, those in attendance helped to pick him up.
“Whether I get through this…” DiStefano said, his voice wavering.
“WHEN!” someone exclaimed from the audience.
“When I get through this,” he responded, moments before delivering the most powerful portion of his speech.
“I’m not here to survive,” he said. “I’m here to conquer this.”