Phillip Esposito will graduate in 2017, despite life-threatening illness

An area youth struggling with a life-threatening disease has accomplished his dream of graduating high school — even after becoming dangerously ill with cystic fibrosis (CF) and spending 26 days in the hospital during March, seven in the Pediatric Intensive Care Unit.

Phillip Esposito doesn’t want anyone to feel sorry for him.

“You’ve got to play the cards you were dealt,” he says. “When people say they feel sorry for me, I tell them I wouldn’t be who I am if I didn’t have CF. It has taught me how important the small things are. As long as you have people you care about and that care about you, that is all you need in life.”

His mother, Tiffony Esposito is not that strong. Talking about her son’s battle with CF brings a flood of emotions and, usually, tears.

“When most high school students think about their future, they ask where they will go to college or who they will marry or where they will work,” she says. “Phillip, at age 18, is making decision regarding Do Not Resuscitate and End of Life Care and signing his Living Will.”

At the age of three months, Phillip was diagnosed with cystic fibrosis (CF). Cystic fibrosis is a disease that affects many areas of the body including the lungs and digestive system. There is no cure.

Phillip has to take about 30 pills and follow an exhausting ritual of treatments to stay healthy. The daily rituals take about four hours out of his day. He must wear oxygen and a bypap machine at night. It is not unusual for him to spend two weeks in the hospital every few months.

Phillip attended all of his grade school years at Searcy Elementary. When asked what he remembers about school, Phillip jokingly says, “I don’t remember, I wasn’t there.”

Then he grows serious, and says: “I appreciate all the help from the dedicated teachers though all the years. Without them, I wouldn’t have made it through and received my diploma.”

Kelly Walker is the school nurse at the Gallatin grade school. She remembers Phillip very well:

“From the day I met him, Phillip had a fire from within, the fire of a fighter and a never-give-up attitude,” said Nurse Walker. “He was always trying and always knew it was going to be tougher and harder for him than it was his classmates.”

Phillip needed to go to the nurse’s office in the school every day to take his medicine with a snack.

“While the other kids were playing and roughhousing in PE or recess, Phillip was coming to the nurse, struggling and gasping for air just from sitting in class or from walking down the hall!”

Mrs. Walker added that though school was not an easy task for Phillip, he was never going to let that stop him.

“As a nurse, a parent, and a friend, I admire his strength and will to fight,” she said. “We all can learn something from him. I know that because of Phillip I’ve learned that my life isn’t as bad as I think it is sometimes, and that I can always tackle things I don’t think I can. I am a better nurse because of him. I am so proud of you Phillip and this milestone you are crossing.”

According to statistics, only one in 3,700 people in the United States is diagnosed with Cystic Fibrosis. Amazingly, when Phillip attended school at Gallatin, there were two other students attending with the same disease.

GHS School Counselor Joyce Cox noted that this unique situation created some complications. The three students could not be present in the same classroom, so class scheduling was an issue. Teachers had to constantly disinfect classrooms between each period for the safety of these students. The students’ breathing treatments had to be scheduled at certain times to avoid meeting in the nurse’s office.

Despite all the fuss, Phillip just wanted to be a normal kid….and he was. Mrs. Cox recalls that Phillip liked to joke around with his friends and sometimes, as she says, “his mouth got him into trouble with classroom teachers.”

“I appreciate my friends, then and now,” Phillip says. “Making friends in school was a hard thing to do as I couldn’t keep up with everything that was going on.”

Another teacher, Coach Doug Nichols, remembers Phillip as a respectful young man with a great sense of humor who liked to smile, laugh and joke.

“In our elementary years together Phillip was like any other student,” said Coach Nichols, who retired in 2012. “He loved to play, run, and do whatever everybody else was doing. He knew his limits on what he could do and what he couldn’t. Just to meet Phillip you wouldn’t know he was sick. He would have extended periods of time where he was absent from school because of being in the hospital. But that never stopped him from doing what he wanted when he came back to school. Congratulations on graduating, Phillip!”

Phillip went up to his freshman year at Gallatin High School.

It’s not unusual to hear Phillip refer to his “fight” with CF, or his battle with the disease. So it no surprise that he went out for a demanding sport like wrestling in junior high with Coach Barron Gann. Coach Gann remembers this about Phillip: “One thing I will say, win or lose, Phillip walked off the mat with his head held high.”

Counselor Cox, who first met Phillip when he moved up to the junior high building for seventh grade, said it was remarkable that Phillip was absent only 32 days that year and was able to stay abreast of school work.

The following year, his eighth grade, however, he struggled with lots of medical issues and missed over 100 days of school. That year, GHS worked with an educational case worker at Children’s Mercy Hospital.

“It was not the best situation, but it worked for the most part,” said Mrs. Cox. “We took a different approach with Phillip his freshman year. He came to school when he could, and we sent a teacher to his house for additional ‘homebound instruction.’”

Phillip also did some correspondence classes to stay caught up that year. When Phillip was able to come to school, he often stayed in a separate room to stay away from other students, especially during flu season.

“For Phillip and other students with chronic illnesses, there are times when education gets put on the shelf and survival is all that matters,” said Mrs. Cox.” But teachers who know Phillip also know that he never wanted to miss school. On many days, he came when he should have stayed at home. There were days when I knew he wouldn’t make it until three. There were days when I knew a hospital stay was inevitable. He often referred to his hospital visits as a time to ‘recharge his battery.’ He always kept a positive attitude even on his worst days.”

“There were definitely days that I went to school and shouldn’t have, but I wanted to see my friends,” said Phillip. “I pushed myself, I guess, because I wanted to be a better person.”

Mrs. Cox added that when Phillip left the Gallatin school district, she wasn’t sure he would be able to find a way to graduate.

“I should have known that Phillip would find a way,” she said. “Congratulations PHILLIP MORGAN ESPOSITIO, Class of 2017.”

Phillip is now 18-years-old and his lung function is currently 35% – a level at which doctors usually consider a lung transplant. Phillip feels ambivalent about a transplant. There could be complications and it involves a lot of hospital time.

The cards seem stacked against Phillip, but he still managed to complete his graduation requirements while maintaining an impressive grade point average. His disease forced him to quit school full time. He took the high school equivalency test at R-2 High School in Chillicothe. He had to pass each credit at 80%.

He took the final exams at Kirksville, accompanied by a teacher and a nurse.

He has earned his diploma. And it is the actual degree; it is not a GED.

His mother Tiffony said: “There is a motto on his graduation invitation. It reads: ‘The strongest people are not those who show strength in front of us, but those who win battles we know nothing about.’ That’s a good motto for him.”

Phillip was hoping to go to a technical school in Arizona. That is on hold for now. As his doctor tells him, his health comes first. He bought a 1983 Ford truck that he is going to take apart and put back together and learn what he can about auto mechanics on his own.

He and his father Paul own a detail business, PAP Detailing in Chillicothe. He can go in late if he needs to, take a break if he needs to.

One of his favorite things in life is his own truck. He calls it “Rosie,” named after the CF slogan of 65 Roses. “65 Roses” dates back to 1965 when an observant four-year-old, hearing the name of the disease for the first time, pronounced cystic fibrosis as “65 Roses.”

At 18, Phillip is transitioning to adulthood and ready to take on more adult responsibilities.

Besides the usual teenage anxiety, there will be some extra stressors for him. He has been going to Children’s Mercy for the past 18 years. Now Phillip will be going to the adult facility at the University of Kansas (KU). His doctor through all those years at Children’s Mercy, Dr. Black, is retiring soon. They have a strong bond like no other.

“I have known Phillip Morgan Esposito since early infancy,” said Dr. Black, M.D. “He’s not as cute as then, yet has shown his now legendary tenacity — aka pig-headedness. He has dealt with greater medical challenge than 20 average humans put together and still carved out time to develop into a fine young man, now a high school graduate. He is my hero.”

Phillip will get his high school diploma in the mail, but he’ll get it.

And he will celebrate. He and a friend are holding a party from 2-4 p.m. on Saturday, May 13, at Dockery Park in Gallatin.

By getting his high school diploma, Phillip has accomplished a major life goal. Phillip says his plans for the future are to enjoy life, love deeply, have the most positive impact he can on the people he meets, and strive to always be a better person.

He will prove stubborn to the end.

As Phillip says: “The difference between success and failure is saying you are going to do something, and doing something you said.”