Constable: 'Miracle baby' now working on cystic fibrosis cure

Born two months premature on Sept. 17, 1999, on the bathroom floor with help from paramedics who weren't sure he or his twin sister would survive, Will Belmonte started life as a “miracle,” says his mother, Adrian Belmonte. Twenty years later, Will still works in the miracle realm, as The Will B Foundation raises money to find a cure that will help him and every other person with cystic fibrosis.

“Will B. You can do a lot with that,” Will says. “One day, I believe there Will B a cure for cystic fibrosis.”

The start of the twins' lives 20 years ago was so dramatic, the Daily Herald wrote a story about it.

When Adrian Belmonte, pregnant with the couple's twins, felt something was wrong, she phoned her husband, Bill, a lawyer who rushed home from work to find a host of police and paramedics already there. A police officer asked Adrian how she was.

“Not good. These babies are coming,” she remembers saying. Itasca paramedics Kelly Firestone and Mike Haugh delivered Will and his sister, Alexis, on the bathroom floor. Will was blue until Haugh got him breathing. Alexis was breech, with her head facing the wrong way for delivery.

Wood Dale paramedics, also on the scene, rushed Will to Alexian Brothers Medical Center, followed by Itasca paramedics with Alexis. Roselle paramedics took the mom to the hospital.

“They needed to be baptized. That's how critical they were,” Adrian says, following the guidelines of her Catholic faith to have everyone baptized before they die.

“The older we get, the more our parents tell us the story of how we were born,” says Alexis. “Wow. It's incredible.”

The babies ended up at Loyola University Medical Center in Maywood, where they spent two months in the pediatric intensive care unit. At birth, Will weighed 2 pounds, 9 ounces, and Alexis was only 1 pound, 14 ounces.

They came home in November with a 25-pound monitor and tubes in their noses. Alexis is now a healthy sophomore at the University of Minnesota. Will and a roommate have an apartment as they begin their sophomore years at DePaul University in Chicago. As a toddler he seemed fine.

“I played baseball, football. It never occurred to me that something could be going on,” Will says of his childhood. By second grade, Will developed a frequent cough. He had tubes put in his ears, his adenoids removed and periodic bouts of pneumonia.

At age 10, Will was diagnosed with cystic fibrosis, a life-shortening, progressive, genetic disease that affects the pancreas and causes thick mucus to form in the lungs. He takes several medications and uses a vibrating vest for treatments every morning and every evening.

Since his father, a Bloomingdale village trustee and lawyer, was diagnosed with multiple sclerosis at age 30, shortly before the twins were born, Will had seen his parents raise funds to fight MS, and figured they could do the same for CF.

“Hey, why don't we start a foundation and put some good out there,” Will remembers asking his parents when he was 12. He came up with the name for The Will B Foundation, and the first fundraiser in 2012 raised $10,000 for the Cystic Fibrosis Foundation. Now, Will's foundation, an official 501(c) (3) charity, has already raised more than a half-million dollars and has a goal of raising $100,000 at “Cocktails to Cure CF” from 6-9 p.m. Oct. 10 at Belvedere Events and Banquets, 1170 W. Devon Ave., Elk Grove Village. To buy a $75 ticket or donate, visit thewillbfoundation.org.

Will says he's inspired by his father's attitude about living the best he can with MS. The dad gets inspiration from his son.

“This kid, he doesn't complain. He does what he's supposed to do,” Bill says.

“We're so lucky he's as healthy as he is,” Alexis says of her twin. “He's very aware of what he has, and he has a compassionate heart to help others.” Will and Alexis always come back for the fundraiser.

The family figures the Will B Foundation will outlive CF. “Let's find this cure and figure out who else needs help,” Adrian says.

Will is in the minority of CF patients who don't have digestive problems, but his weight is an issue. While many students add the “Freshman 15” pounds in college, the 5-foot-5 Will went from 133 pounds to just 126 during his first year of college.

“That was a big wake-up call for me,” says Will. “I have to constantly remind myself to eat. I need 5,000 calories every day, so I have to make some heavy-duty meals.”

His treatments take a couple hours out of each day, and Will says he usually misses one week of classes every winter because of his lung issues. “But I want to be as normal as possible,” Will says.

A varsity tennis player as a member of the Lake Park High School class of 2016, Will plays intramural basketball and softball in college. While CF typically gets worse with age, Will says he thinks research can flip that prognosis.

“They're coming out with a drug later this year that is supposed to really improve lung function,” Will says. “I don't look too far ahead, and I don't look at the past. I just focus on the day-to-day.”

Two decades after barely surviving his premature birth, Will is dedicated to living life to the fullest in spite of CF.

“I don't want the disease to control me,” Will says. “I want to control the disease.”