Tony Arenas ‘on the right side of things’ with GodRead Time 7 min

Coach Tony Arenas talks to his St. Charles, Hartland, CYM basketball team during a timeout in a game on March 20, 2011. The team went on to win the CYM championship in the cadet boys’ division. (Submitted photo courtesy Mike McGinnis  epicfotos.com)Corey Lundwall has nothing but good things to say about his CYM basketball coach of four years, Tony Arenas.

“Basically he’s a great guy, he’s a great teacher, explains things well, never got angry, he played with us during practices,” said Lundwall, 20, who started playing basketball for St. Charles Parish, Hartland’s CYM team five years ago when he was a sophomore at Hartland Arrowhead High School.

Tony had such a positive impact on Lundwall’s life that a year ago he returned to the program as an assistant basketball coach.

Yet, when asked about how Tony’s health struggles affected him and the team, Lundwall was baffled.

“His health? What’s wrong with his health?” he asked.

He was unaware that his longtime coach, Tony, 26, has struggled with cystic fibrosis since birth; that in order to stay healthy, Tony spends nearly four hours a day wearing a vest-like apparatus that shakes his lungs to loosen the mucus that forms; that Tony takes 14,000 pills a year at a cost of $35,000 a month and that doctors’ visits and hospitalizations are a regular part of his life.

Lundwall, and likely his other teammates, had no clue of their coach’s medical condition, ­­­– and that’s just the way Tony likes it.

“Tony wants to be known for Tony, not cystic fibrosis, not the disease,” said his mother, Marie Arenas, in a telephone interview with your Catholic Herald. In fact, she said it’s only recently that he has agreed to speak publicly about the illness in the hopes that by doing so, he will help raise awareness and money for an eventual cure.

Last February, Arenas gave a talk at an event at the Hilton Hotel in downtown Milwaukee.

“He nailed, it,” said his proud father, Jerry Arenas. “There were 600 people there and there was not a dry eye in the room, except for his. It was fabulous.”

While Tony doesn’t like to talk about himself, he and his family, members of St. Charles Parish, have taken the lead in fundraising for the Cystic Fibrosis Foundation. Since their son’s birth, the Arenas family has raised $1.3 million for the foundation through fundraisers held at their restaurants. For years, the family, whichThe Arenas family poses for a photo at Lisa Arenas Hedrick’s April 7, 2010 wedding to Cody Hedrick. Pictured left to right are Tony, Marie, Lisa and Jerry. (Submitted photo courtesy Lisa Arenas Hedrick) includes older daughter, Lisa Hedrick, a reading teacher in the Hartford area, owned the Porterhouse restaurant near General Mitchell International Airport , and since 2006, have owned Palmer’s Steakhouse in Hartland. Over the years, the fundraising has grown from a simple passing of the hat, which netted $1,500, to an all-out fundraiser called the Tent Event, featuring a silent and live auction, music and visits from celebrities, including former Bucks coach George Karl, former Bucks player Sam Cassell, Milwaukee County Sheriff David Clarke and the late Packer great, Reggie White, to name just a few. The event, which will be held at Palmers on Sunday, Sept. 11, now raises some $50,000 to $70,000 each year, according to Marie.

While Jerry conceded that putting on the event is a lot of work, he now looks on it as one of the good things that has come from what initially was a bad diagnosis.

“We’ve met so many wonderful people; we’ve been in a position to meet a lot of athletes and other special people who have crossed Tony’s life and have impacted us. That’s part of the good that’s come with the bad,” said Jerry.

Tony appeared to be a relatively healthy baby when he was born, said Marie, although she and doctors were concerned that he wasn’t gaining weight and he always seemed to have a cold or cough. Yet none of the handful of pediatricians could find a cause until one doctor listened to his lungs during a trip to the pediatrician for Lisa.

“He seemed so concerned about Tony, and wanted to listen to him breathe. He said it sounds like he’s wheezing. While he didn’t say anything, I thought he was trying to alarm me,” she said, recalling that Good Friday visit to the doctor. Once home, Marie consulted her sister and Tony’s godmother, Rose Krzykowski, who pulled out a baby book and read that wheezing in a baby could mean asthma or cystic fibrosis. As the sisters read the symptoms for cystic fibrosis (ferocious appetite, but little weight gain, wheezing, greasy stool), they became convinced that Tony had the illness.

Shortly after, testing proved them right, and the family learned to care for a child with the illness. At the time, Marie was told Tony might live to be 6 or 7.

Suddenly the Arenas family’s life revolved around Tony and his needs. Three times a day, they had to pound on the infant’s lungs in 12 spots, described Marie, explaining that if the mucus just sits and collects, infection can set in.

Their dedicated care, combined with a strong faith life, supported the family through the years.

“I never got angry with God. When you have faith, what do you when you are in trouble? You pray,” Marie said, explaining she has a special devotion to St. Anthony.

The diagnosis was not easy to accept, admitted Jerry, who recalled sitting with his father crying in the cafeteria at the old Children’s Hospital. “We’re both crying, and talking and I remember asking him why this was happening to us.”

While his father had no answer for him at the time, years later when he and his dad were again together counting the money raised at one of the annual fundraisers and they hit the $30,000 mark, his dad turned to him and said, “This is why it happened to you. You’re going to be able to make a difference.”

Jerry had a similar experience as the family left Mass one Sunday morning. In his homily, the priest told the congregation that everyone had a special ministry in life.

As they drove home, Jerry said he told Marie, “That’s our ministry. We’re here to help find a cure for CF. I finally understood what happened.”

Although their fundraising efforts were public, Tony rarely told those around him that he suffers from the disease. He let his academic and athletic abilities rather than the illness define him.

He attended elementary school at St. Aloysius School, West Allis, and began playing basketball as a fifth grader. When his family moved, he attended St. Veronica School, Milwaukee, and continued with basketball. He stopped playing organized ball while at St. Thomas More High School, Milwaukee, but while there, he had what he describes as the “coolest four years of my life” when he was chosen to be a ballboy for the Milwaukee Bucks. As a ballboy, he not only saw the NBA up close, but he forged lasting bonds with some of the players. He still keeps in touch with Cassell – who has texted him wishing him well during a hospital visit, and who a few years ago came back for the fundraiser, even though he was no longer a member of the Bucks.

Tony graduated from St. Thomas More in 2003 and, much to his surprise, was selected by his peers and the staff as the recipient of the Thomas More award for the person who best represents the mission of the school. He was also selected a Brady scholar.

Tony attended Marquette University, graduating magna cum laude in four years with a double major in marketing and finance.

Now working for the family restaurant as a host and doing office work, he began volunteering as a basketball coach about six years ago when the family belonged to St. Veronica. After two years there, he began volunteering at St. Charles when the family moved west.

His most recent team won the CYM championship, defeating St. Boniface this past March.

While coaching takes up most of his free time from December to March, he said he can’t wait until the next season begins.

“I really try to make it fun for them,” said Tony, noting that not only does he share his love of basketball with the players, but he hopes they see him as a positive role model.

As for his health, Tony doesn’t dwell on that. He pointed out that all his life he’s stayed “ahead of the curve.” When he was born, life expectancy for those with cystic fibrosis was less than 10 years; when he was 12, it was 20; and now, he said the median age of survival is 37.

“I’m on the right side of the curve, which is going up,” he said. “I never seem to worry about it because there is no sense in worrying. Maybe it’s faith or hope, but I know I’m on the right side of things and I’m sure God only gives you things you can handle.”

Marie sees that acceptance in her son, too, yet she can’t help worrying about him, especially when she sees him winded or having trouble breathing.

“He is a remarkable human being. He is so giving, he always listens, never complains, he’s always positive,” she said.

The couple couldn’t be prouder of their son, said Jerry.

“There’s so much to be proud of. The fact that he went to college, graduated in four years. I’m proud of the way he handles obstacles, doesn’t complain. He’s got the right to complain and he doesn’t. He’s a very respectful young man from the standpoint that here’s all he has dealt with; we all have obstacles, but he’s been dealing with this since he was six months old, but it has never affected the way he has acted,” said Jerry, adding he’s also impressed by his son’s strong faith.