NEW PALESTINE — One wish. What would it be? That was the question that faced 8-year-old Clayton Trebley, a third grader at Sugar Creek Elementary School.
Hawaii? The Super Bowl? Disney World? It was all on the table. Clayton and his twin sister, Catherine, had battled cystic fibrosis since birth. Their parents, Jason and Rhonda, had worn a path between their home in New Palestine and Riley Hospital for Children at IU Health. Clayton spent the first five months of his life there, pegged by doctors as a high-risk case.
Clayton was in the hospital when his father posed the question. He’d barely eaten a thing in two days.
“Daddy, I just want a piece of toast,” Clayton said.
After further thought, and a piece of toast, there was one thing he wanted. One wish above all others. Not Hawaii. Not the Super Bowl. Not Disney World.
“Daddy, do you think I could be on the sidelines for the Dragons?” Clayton asked.
The Dragons. New Palestine football. The defending state champions. All this 8-year-old wanted was to stand on the sideline for a Friday night and watch his heroes play.
“Let me see what I can do,” his dad told him.
Jason Trebley wouldn’t dare complain. It’s not his style. As a firefighter with the Indianapolis Fire Department, he deals with life-and-death situations frequently. Having twins with cystic fibrosis is a similar situation.
“A lot of people probably don’t understand what kids with cystic fibrosis have to do to stay healthy,” Trebley said. “There’s constantly a fine line you have to walk. It’s a pretty hard daily regimen.”
Cystic fibrosis is a life-threatening genetic disease that causes persistent lung infections and progressively limits the ability to breathe. About 30,000 people are living with the illness in the United States, according to cff.org.
Clayton and Catherine are up at 6:30 every morning for 30 minutes of breathing treatment. Both twins wear a vibrating vest that loosens the mucus inside their lungs. If they have a cold, this vest is required three times a day. They also must take medicine before eating to help them break down their food. Their lunch is meticulously packed every day to make sure they have enough high-calorie food.
And sometimes even the best-laid plans go awry.
“It seems like Clayton always has a bellyache,” Jason said. “It’s just something we have to deal with and monitor.”
Clayton barely weighs 50 pounds, more than 30 pounds lighter than his sister. But Jason and Rhonda keep both twins active in sports, which has helped them keep their lung functions in the 90 percent range and higher.
Catherine loves softball. She’s a catcher and pretty good one. She recently tried out for and made the Team Blaze travel club. Clayton is currently playing football — his fourth season — and also plays basketball and baseball.
“We don’t let them sit around the house,” Jason said. “We want them out there working hard. The doctors have told us, whatever you are doing, keep doing it because it’s working.”
Kyle Ralph was walking up to his 5-year-old son’s baseball game when Trebley approached him with the idea. Ralph, the third-year New Palestine coach, was speechless.
“Don’t waste your wish,” Ralph finally told Trebley. “We’ll take care of it.”
By the next morning, Ralph was texting the details of his plans to Trebley. The Richmond game, on Aug. 29, would be the big night. Clayton would get the full game-day experience, including leading the team out of the locker room and joining the captains at midfield for the pregame coin flip. During the game, Clayton watched intently from the sideline in a No. 15 New Pal jersey as the Class 5A top-ranked Dragons rolled to a 72-7 win.
Clayton doesn’t say much. The joke at his barber shop is that they are still waiting to hear him speak after six years of visits. But his ear-to-ear grin that night was impossible to miss.
Alex Neligh, New Pal’s senior quarterback, took Clayton’s hand as the captains walked on the field before the game and kept him by his side in the locker room at halftime.
“He was a little star-struck but he was overjoyed to be out there with all of us,” Neligh said. “You could tell by his facial expressions that he was loving it.”
It didn’t end there. Jason has a video of Ralph addressing the team after the game and presenting Clayton with a game ball from last year’s state championship playoff run. Ralph said it’s the first — and likely last — game ball he’d awarded.
“We had a bad practice that week,” Ralph said. “We had some kids sick and we were trying to battle through some stuff. We were feeling a little sorry for ourselves. So Clayton’s presence was a great reminder for our team that you don’t take anything for granted. Here’s a kid literally coming right from the hospital to be with us. Are you going to come out here and feel sorry for yourself because you don’t feel good and have to practice for a couple hours? Put yourself in Clayton’s situation and see what he has to deal with on a daily basis.”
Clayton had an impact on the team in more ways than one.
“He looked up to us as something way bigger than high school football players,” senior lineman Andrew Yazel said. “Sometimes we don’t think about all the gifts we are given to come out here and play every Friday night.”
Brandon Vinson died from complications of cystic fibrosis in late June. He was 11. The Trebleys attended the funeral of Brandon, whose father, Greg, also works as a firefighter with IFD.
On the way to the funeral, Catherine asked: “Am I going to die from this?”
Tough question. A question with no easy answer. The life expectancy of adults living with cystic fibrosis has increased to the late 30s according to recent studies.
But still, there are no easy answers.
“Yes, you are,” Jason told his daughter. “But that’s why we do what we do. We want to do what we can to help you live as long as we can.”
Jason, who coaches the seventh grade football team at Doe Creek Middle School in New Palestine, knows the twins are tough. That’s what he and his wife, who also works for IFD, preach to the kids. If there’s a correlation between sports and dealing with cystic fibrosis, it’s this: Do the little things right. Day after day.
“Success is defined in many ways,” Jason said. “For them, success is defined as staying healthy. You have to do the little thing to be healthy. Those same lessons can be applied to football. Do the little things and you’ll be successful.”
Clayton wears his No. 15 jersey every Friday. The week after he spent the evening with the team, the Dragons visited his elementary school. There was Clayton, grinning in the hallway in his jersey as the team approached.
“The kids picked him up and gave him a big hug,” Ralph said. “He was standing there with the biggest smile you’ve ever seen.”
Clayton will be at Lucas Oil Stadium on Saturday when New Palestine plays Pendleton Heights. The players in the New Pal youth program will be allowed to run on the field, wearing their team jerseys. Clayton will be wearing one, with his No. 15 Dragons’ jersey on underneath.
As for his wish? The Trebleys haven’t revisited that question just yet. As long as he’s wearing that jersey, Clayton is living the dream.
Call Star reporter Kyle Neddenriep at (317) 444-6649.
WANT TO HELP?
Greenfield hosts a Great Strides walk each spring to raise money to help find a cure for cystic fibrosis. It is one of several walks sponsored by the Indiana chapter of the Cystic Fibrosis Foundation. For more information on upcoming events, visit http://www.cff.org/Indiana/