RIT hockey manager plays key role for Tigers

Jim Mandelaro | USA TODAY Sports

Nothing gets Joe Vicario down.

Not the 28 surgeries he endured in his first 12 years.

Not the two cancer surgeries or emergency abdominal surgery last winter.

Not the syndrome that left him with a heart defect and without two organs, a thumb, and an ear.

"I don't think negative," the Buffalo native says. "My mom always taught me to be positive. I don't let anything get me down."

Vicario has never skated a minute for the RIT Tigers, but the junior is a huge cog in the daily operation of the men's and women's Division I hockey programs. The 21-year-old student manager is the one who coordinates the pregame meal, hangs the uniforms, cleans the locker room and carries the coolers.

And he's the one with the remarkable story of perseverance. Year after year, surgery after surgery, challenge after challenge.

Down but not out

Vicario was born five weeks premature on Jan. 2, 1992 in Buffalo, and doctors weren't sure if he or his mother would live. Martha Vicario had experienced a placenta abruption — where the placenta separates from the uterus before the baby is born. An emergency Caesarean section took place, and Joe entered the world at 4 pounds, 10 ounces.

Martha had torn her placenta at 11 weeks and began going once a week for sonograms.

"All the doctors knew then was that Joe was missing his left kidney," Martha Vicario says. "But they said there are millions of people with one kidney."

But he was also born with a number of issues: No left ear, left lung or left thumb. His aortic heart valve is bicuspid instead of the normal tricuspid, something that happens in less than 2 percent of the population. He has regular checkups for that. All of the vertebrae on his left side are fused with his neck, meaning he could never play contact sports. His left arm is shorter than his right.

Doctors diagnosed him with Goldenhar Syndrome, a rare congenital defect characterized by incomplete development of the ear, nose, palate and lip, abnormalities in the formation of the face and head and underdeveloped or absent organs.

"It was unbelievable," Martha says of hearing the news. "It was devastating."

Martha and her husband Chuck took their boy home and raised him as normally as possible while he endured one surgery after another. Four on his hand (doctors rotated his left index finger to give him a thumb). Three so that he could use his left arm. One for his kidney (urine was blackflowing into the organ). Another for a hernia. And so on.

"It has been very hard for the entire family: emotionally, physically and financially," his mom says.

Even though doctors told them they had only a 2 percent chance of having another child with Goldenhar, Martha and Chuck waited 10 anxious years to have another child. Jeremy was born in 2002 and Julia followed two years later.

"They look up to me," Joe says proudly. "I love them so much."

Martha is a stay-at-home mom. Chuck is a machine operator at a Goodyear Dunlop Tires plant. Each time Martha gave birth, Chuck was laid off, and Joe's medical bills kept piling up. Martha says the bed in the intensive care nursery was $80,000. The recent rounds of unexpected surgeries have cost $67,000 (medical insurance has defrayed some of the cost), and the total since Joe's birth is more than $1 million. Chuck and Martha have had to file for bankrupty twice just to keep their home.

"That's why Joey has worked so hard," Martha says. "He has told me many times, 'Mom, no matter what I'm going to get a good job so you and Dad don't have to worry, because you've sacrificed everything for me, Jeremy and Julia.' "

Through it all, Joe never lost his sweet disposition. When he was in second grade, he learned that a girl in kindergarten was scared of him because of his looks. Joe asked the school principal if he could speak to the girl, and the principal agreed.

"I don't want you to be scared of me," he told the girl. "This is the way God made me."

His parents fought hard to give him a proper education. One psychologist diagnosed him as being severely mentally retarded in elementary school. Martha and Chuck didn't believe it, and it took five years before they found the perfect place for him at St. Mary's School for the Deaf in downtown Buffalo.

"Joe went from getting 50s and 60s to being on the honor roll," his mother says proudly. "We were told he'd never learn sign language because he couldn't use his left arm. He learned sign language in six weeks."

Vicario loved sports, especially going to Buffalo Sabres games. His dad had been a member of the Junior Sabres, and Joe dreamed of following in his skates. But he knew that was impossible. Instead, he got involved in sports as student manager of the St. Mary's soccer, basketball and track teams. He embraced it and became so popular that he received 20 academic and athletic awards by the time he graduated in 2010.

Yes, athletic awards. Joe Vicario, who never kicked a ball, shot a jumper or ran a yard, was named St. Mary's Student-Athlete of the Year as a senior. His mother put all 20 plaques on the walls of his room back home, and there they remain.

"How proud am I?" she asks. And then she begins to weep. "I'm very proud. Joey is my inspiration."

Although he says he wasn't bullied, Joe did face his share of ostracism from peers. But he didn't buckle. He didn't flinch.

"My mom set me on the right path," he says. "She told me to always be strong, tough, positive. I owe so much to my parents, I really do."

Coming to RIT

The 5-foot-7 Vicario has been at RIT for three years but has endured three leaves of absence. The first leave came his freshman year, when stomach pains and stress made college overwhelming. The second took place last fall, when he was diagnosed with cancer. The third came earlier this year, when he underwent emergency surgery.

He was already accepted at Rochester Institute of Technology when he saw the 2010 men's hockey team's run to the Frozen Four on national TV.

"I thought it was just great," he says. "And I have always loved hockey, so I wanted to be a part of the team."

He emailed Wilson, who passed it on to Jeff Siegel, RIT's director of hockey operations. Siegel had been a student manager in college and found a lot of similarities in Vicario's email to the one he had once sent to a hockey coach.

"We met, and it was clear right away that I wanted Joe to be part of us," Siegel says. "I babied him at first, because I didn't know what he could do. But he was carrying heavier coolers than me."

Vicario was a volunteer the first two years and now receives minimum wage. And it is clearly Joe's show.

"He won't even let me touch the jerseys," Siegel says with a laugh. "He talks to them. He's very superstitious."

And a bit obsessed with cleanliness. If Vicario spies even one speck of lint on the floor of the RIT locker room, he pounces on it.

"I can't stand anything on the tiger (logo on the center of the carpet)," he says.

Last Saturday, the Tigers left campus for an afternoon practice at Blue Cross Arena before their game against Michigan. Associate head coach Brian Hills and assistant Dave Insalaco were showing recruits around Ritter Arena when they saw Vicario.

"What are you doing here?" Hills asked. "Why aren't you with the team?"

"I have to take care of the meals for the boys when they come back," Vicario answered. "I want to make sure it's taken care of."

Hills laughs at the memory.

"That's Joe," he says. "He'll do anything for the team, and everyone loves him. Who wouldn't love him? He's a total part of the team."

Wilson says Vicario always shows up with a smile and a positive attitude.

"It's just amazing considering everything he has gone through," the 15th-year coach says. "He's just a great kid."

Wilson nicknamed him "Part Time Joe" because the team never knows when Vicario will be around. He majors in applied computer technology at RIT's National Technical Institute for the Deaf and a full slate of classes limit his attendance at practice. He rarely goes on the road with the team.

"He's here and then he isn't," Wilson says. "Part Time Joe."

Vicario loved the name so much he put it on his Facebook profile.

"PTJ, that's me," he says with a smile.

More setbacks

Last Nov. 23, the day after Thanksgiving, Vicario was diagnosed with stage 1B testicular cancer.

"I thought I was done with surgeries," he says. "But I wasn't."

Vicario took a medical leave from RIT and underwent his first surgery on Nov. 30 and his second on Jan. 7 — just five days after his 21st birthday. Chemotherapy was not a true option because of his medical condition. As a precaution, Vicario's doctor removed his lymph nodes under the intestines up to where his left kidney would be. His left testicle and surrounding tissue also were removed. He has been cancer-free for nine months but must undergo regular CT scans and have blood work done every three months for the next five years.

The RIT players decided to surprise him on his 21st birthday — five days before his second cancer surgery. Seven of them plus Siegel showed up at Vicario's home in Amherst with a white stretch limo. They took Joe, his parents, his siblings and his grandmother to the Seneca Niagara Casino for an evening of gambling, dinner and laughs. The Vicarios spent the night at the hotel in a suite.

"And I even won $200 playing roulette," Joe says with a laugh. "It was awesome. I consider the team my family. I love those guys."

The feeling is mutual.

"Joe is an inspiration to all of us," junior forward and team captain Matt Garbowsky says. "He puts everything in perspective."

He's not going away anytime soon. Vicario has more than a year left at RIT before he graduates, which means he'll be around when the new Gene Polisseni Center opens for hockey next fall.

"We joke that he's stalling just to be in the new arena," Siegel says, "but the truth is we all love having him around."

Two months after his surprise party, Vicario was back in the hospital. He had experienced stomach pain on and off for three years, almost always after eating, and doctors had passed it off as acid reflux. But on March 12, the pain was agonizing and Vicario became ill in his bathroom. He called his mom, who notified Siegel. He called 911, and Joe was taken by ambulance to Strong Memorial Hospital as the parents raced from Amherst to Rochester.

Doctors discovered a complete mess when they opened Vicario up.

"Everything was free floating," his mother says. "His stomach, colon, spleen, intestines ... they found his spleen near his liver on the right side. It's supposed to be on the left."

Joe had been born without connective tissue, something his parents never knew until that night. His esophagus was twisted and his stomach was stuck up in his chest cavity by his heart.

While doctors were operating, they removed his appendix as a preventive measure. He spent two weeks in the hospital before returning to school — and his beloved job as hockey student manager. Vicario was visited in the hospital by several Tigers plus Wilson and Hills, who was on crutches following hip surgery.

"The little stuff I was going through was nothing compared to what he's going through," Hills says. "Joe is an inspiration to us. He battles back from everything."

Despite this back-to-back whammy — cancer and emergency surgery — Vicario manages to light a candle where others curse the darkness.

"If I'd had the chemo for my cancer, I wouldn't have been able to have the stomach surgery," he says. "I would have died within 24 hours. It was a blessing."

All about Joe

Vicario loves watching ESPN and reality shows like Big Brother and Survivor. He's addicted to Dole's strawberry kiwi juice, and his favorite food is his mom's lasagna.

"But I'm full-blooded Italian, so I love all Italian food," he says.

He's a regular on Facebook and Twitter and is as eloquent as he is dedicated.

"Be good," reads one post. "If you can't be good, be great."

Another: "If you're going through hell, keep going."

He has a driver's license, although he doesn't have a car. He lives alone in an on-campus dorm but is expected to gain a roommate this academic year. He has few regrets despite his numerous obstacles, but one is that he will never play the game his father played before him.

"That kind of bothers me," he says. "I wanted to follow in his path."

In many ways, he already has. Vicario knows he'll never score a goal or beat the syndrome that has been with him for 21 challenging years. He prays every day for God to keep him strong and healthy. He posts on Facebook, "I can and I will survive!"

Most of all, he's happy with who he is.

"Everything happens for a reason, and it's not a bad reason," he says. "I live the way I can. I'm here. I'm me. Life is good."

Mandelaro also writes for the (Rochester, N.Y.) Democrat & Chronicle.