Matt Pagani begins his senior year this September and looks ahead to college. Not unusual events in a young person's life. However, Pagani, 18, of Spencerport, was born with central hypoventilation syndrome, a rare condition in which his brain fails to send the message to breathe when he falls asleep. When he was born, his parents, Claudia and Ed Pagani, were told he wouldn't live past three years old. He spent the first year of his life in the pediatric intensive care unit at Golisano Children's Hospital at Strong and was one of the first ventilator children in Monroe County to come home. Matt will need the ventilator for his entire life when sleeping. A tracheotomy enables him to attach himself to the ventilator. Still, Matt Pagani has played soccer, baseball, basketball and plays on the varsity tennis team. He is spirited, hard-working, sensitive and has a sense of survival," Claudia says. And, he has a depth beyond his years. She credits his brother, Brett, with giving Matt continual support and being a great friend to his brother. She also credits family and friends who have been "loving and supportive of us all," and fostered a positive attitude. About his senior year at Spencerport High School, Matt says, "I'm very excited that this is my last year (of high school). I've gone a long way and tried very hard. I know I'll do well this year and that will bring me to the college point. I will go on from there." "Spencerport schools," Claudia says, "have been extremely supportive and have contributed to Matthew's success. He is on the high honor roll." Laurie Boughter, assistant principal at Spencerport High School, says, "I have been aware of Matt, because of knowing the family, and because I had Brett, who I got to know as a student prior to Matt coming to the high school. I had also heard a lot of stories from people about how Matt would go out and compete in a sporting activity, even as he had to drag along the medical machines." "Matt is a model for so many of us that look at life and think that it is tough. Here is a young man that beat everyone's expectations and continues to live his life to the fullest, even if that means adjusting," Boughter said. "I wish every student would look at Matt and think of what they could become without all the walls that Matt has had to face. I wish that every parent could look at Claudia and Ed and try to be half the parents that they are. I wish that every brother or sister could look at Brett and feel half the love that Brett has shared. I wish that everyone would look at that family and try to model them. What a great world this would be," Boughter said. "I have witnessed with amazement a young man who never (and I mean never) uses his health as an excuse, complains about things or has a "poor me - be sorry for me" attitude," said Bonnie Frank, Matt's high school counselor. "He looked so young to me as a freshman - you should see him now! In many ways he's like so many of my other students - and that is such a glorious thing. Yet, in many ways he is unlike any other. Matt has grown into a young adult who has lived beyond expectations; he's learned the result of quiet perseverance and the demands of integrity that setbacks and progress go hand-in-hand, and that wisdom can come in the least expected places." His bringing inspiration to others recurs in compliments and musing from many who know Matt's life. Theresa McGowan, Matt's counselor in middle school, still keeps his picture on a shelf in her office. Claudia says McGowan was a tremendous help, "We have laughed together and we have cried together," says Matt's mother. "Matt is an inspiration story for us. He refuses to be considered sick, different, handicapped - whatever the label might be. He wants to be treated like everyone else. He doesn't say so in so many words; he behaves that way. You see a boy who greets the world with optimism and amazing resilience. He is an amazing kid. He always worked hard at whatever he did (in middle school). He always had a sense of humor. He got along with everyone - all types of kids and adults," said McGowan. "Matt looks to the positive," Claudia says. "We've tried to make a positive experience out of every negative experience. "There is a way to find a positive side. Matt has his priorities straight. He realizes what is important in life - family, friends and health - not material objects. I would never choose for anyone to have this syndrome, but Matt is truly a gift. He has enriched our lives in so many ways. We are blessed." "I wouldn't be here without the support of my family and friends," Matt says. Claudia says that Brett recently wrote a thank-you letter to the family for his education and said how blessed he was to have the family he had and that he knows what is important in life. Matt seems to have focused them all. Claudia was told that there is a one in a million chance to have a child with this syndrome. However, a family in Mexico had two children with it, so now the Pagani family is involved in genetic studies funded by grants. Doctors are looking at family histories and blood samples. The Pagani's are working with Dr. Debra Weese-Mayer in Chicago. The condition is undetectable in pregnancy, since the mother is breathing for the fetus. Earlier this year, Matt's aunt, Jeanne Pagani, was the highest bidder for the naming rights for the Golisano Children's Hospital's Horses on Parade creation. The horse, named "Spero" by Brett Pagani, is located at the entrance to Strong Memorial Hospital on Elmwood Avenue. Spero is the Latin word for hope. Matt is looking at local colleges such as St. John Fisher, as well as colleges in the Boston area and in North Carolina. Matt's brother, Brett, is graduating this year from Bentley College in Boston. Matt says he is interested in criminal justice, forensics and other areas of criminology. |
