Event to raise funds for cystic fibrosis research Parents of 2-year-old with disease advocate for medical research BY MARY ANNE ROSS Correspondent Above: Anthony Silvestri, who was diagnosed with cystic fibrosis at 10 days old, plays with a toy train set. His parents describe the 21/2--year-old as a playful and happy child. Below: Kerryann and Ken Silvestri watch Anthony play in their Cliffwood Beach home Tuesday night. The couple is holding an event in May at the Old Bridge Elks Lodge to raise money for the Cystic Fibrosis Foundation. OLD BRIDGE - Kerryann and Ken Silvestri are in a race against time. The couple's 2 1/2-year-old son Anthony was born with cystic fibrosis, which brings a much shorter life expectancy than the average person. There are several variants of the disease. All cause an increase in mucus that impairs breathing and other bodily functions; the most serious involves the pancreas, and unfortunately, Anthony has that form of the disease. Anthony was diagnosed when he was 10 days old and has always required special care. He has been frequently hospitalized, sometimes up to two weeks at a time. His illness leaves him at an increased risk for infections, so he must take about 18 pills a day. PHOTOSBYSCOTT PILLING staff "He spends one to two hours a day on a nebulizer," Kerryann said. "He also wears a pulmonary therapy vest, which looks like a life preserver and is hooked up to a compressor that vibrates his body to reduce congestion." As Anthony gets older, the illness will progress and his treatment will become more complex. "He calls it cystic four-five-brosis," Kerryann said with a laugh, discussing the fact that Anthony, in spite of the disease, is a typical, playful 2-year-old. "He has a smile that can light up a thousand skies," she said proudly. "He loves Thomas the Train. And he knows how to spell Subway and Target," Kerryann said. Before her son was diagnosed, Kerryann knew nothing about the disease. Afterward, she learned as much as she could and even started giving talks on the topic for the Cystic Fibrosis Foundation. Today, she works part time as a pediatric social worker for the cystic fibrosis program at Monmouth Medical Center, Long Branch. She is also a part-time hospice social worker for the Visiting Nurse Association. A native of Sayreville, Kerryann, along with Ken and Anthony, now lives in the Cliffwood Beach section of Old Bridge. Both parents are well known in the community, having volunteered for Pop Warner football - Ken as a football coach, Kerryann as cheerleading coach. Ken continues to coach for the Raritan Bay Cougars, while Kerryann stopped after Anthony was born. Neither Ken nor Kerryann has any relatives with cystic fibrosis. The fact that they were carriers came as a complete surprise. "This is one of the most common genetic illnesses among Caucasians. When both members of the couple are carriers, they have a one-in-four chance of having a child with the illness," Kerryann said. As a social worker, Kerryann has noticed that because of the genetic component, parents often feel guilty. "They blame themselves. They think, 'I gave this disease to my baby.' It's also a shock for them to realize that it never goes away. They have to learn to integrate treatments into everyday life. Taking medicine has to be like other people brushing their teeth," she said. Kerryann feels that her work in hospice has taught her what is important in life. "I feel it's really prepared me for this lifelong journey with Anthony. If God was going to give someone a handicapped child, I'm glad he gave him to us because we have the friends and family to provide support. We are going to teach him that CF is just one of the millions of things that make him special," she said. Advances in treatment could help create a brighter future and a longer life for Anthony. Medical research has already increased the average life span from age 6 to 34. But there is a problem with getting financial backing for research. "Cystic fibrosis is an 'orphan' disease. Only about 30,000 people around the country have it, so there is not much incentive on the part of the drug companies to invest in developing new medications," Kerryann said. The Silvestris are working tirelessly with the Cystic Fibrosis Foundation to raise money to find a cure, and they are not doing it alone. They have a team of about 50 to 60 families and friends called "Anthony's Answer." The group has raised almost $50,000. The community at large will have a chance to help out on Friday, May 11. The Silvestris and their supporters will hold a "Night at the Races Gift Auction" at the Old Bridge Elks, Old Amboy Road. The 7 p.m. event will involve a combination of tricky trays and horse racing. Prizes including a home slot machine, tickets to "Regis & Kelly Live," a six-month membership to Bayshore Healthclub, Six Flags Great Adventure tickets, Broadway show tickets, and gift certificates for restaurants and salons. There will be also be a 50/50 raffle. Tickets must be purchased in advance. Those interested in attending should call Kerryann at (732) 583-8742. For information about cystic fibrosis, visit the Web site of the Cystic Fibrosis Foundation at www.cff.org.