Luke McFadden stood on the top step of the dugout at Arvest Ballpark in Springdale and leaned over the dark green padded rail.
Mounties teammates flanked the Rogers High School junior on a recent sunny, windy March day. His white-frame sunglasses perched on the bill of his royal blue cap, a clipboard in his hand.
What is cystic fibrosis?
Cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe.
In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
Symptoms of CF
People with CF can have a variety of symptoms, including:
• Very salty-tasting skin.
• Persistent coughing, at times with phlegm.
• Frequent lung infections including pneumonia or bronchitis.
• Wheezing or shortness of breath.
• Poor growth or weight gain in spite of a good appetite.
• Frequent greasy, bulky stools or difficulty with bowel movements.
• Male infertility.
Source: Cystic Fibrosis Foundation
He marked each pitch as it was thrown. He noted which pitches were most successful against which batters, information to be used later by the coaches.
Underclassmen baseball players chart pitches, shag foul balls and other somewhat menial tasks as part of the rite of passage. They pay their dues on the journey to becoming a varsity player.
Luke McFadden, 17, knows all about long journeys.
'How do we fix it?'
Luke was just 8 months old in 1998 when he suffered his first respiratory illness. Michelle and Mike McFadden took him to the emergency room on Easter Sunday, where he was first diagnosed with pneumonia. The McFaddens also told the doctor of some other problems their infant was experiencing.
"He had some issues, some respiratory issues, but he also had some bowel issues that we saw," Mike said.
"He ate constantly, but never gained weight," Michelle said. "We just kept trying and trying everything. The not being able to gain weight was the beginning of it."
"Failure to thrive" is the term doctors use when a child is eating normally, but not gaining weight. The two issues flagged doctors that Luke could be suffering from cystic fibrosis.
"I still remember the call," Michelle said. "We didn't even know what CF was. We'd never heard of it. Then you look online, and it's daunting."
Cystic fibrosis is a genetic disorder that affects both the lungs and the digestive system. In the lungs, thick mucus can restrict breathing passages. In the digestive system, it affects the pancreas and its ability to digest foods.
Most often, it is diagnosed before the age of 2, but there are cases in which it was not diagnosed until teen or young adult years. There are more than 70,000 people world wide with cystic fibrosis, including an estimated 30,000 in the United States, reports the Cystic Fibrosis Foundation. Through medical advancement, many patients are living much longer lives, often into their 40s and 50s and beyond.
"Me, with my guy personality, the first thing I asked was, 'How do we fix it?'" Mike recalled. "After we had that initial diagnosis, there was a full week in the hospital just training us and teaching us what we needed to do, how to deliver his enzymes so that he could digest his food, what kind of treatments we had to do to keep his lungs clear.
"So it was a lot thrown on you at one time."
Maintaining normalcy
The Mounties stood shoulder-to-shoulder on the top step of the third-base dugout. Luke, wearing a gray uniform with the No. 1 on the back, blended in.
"If you didn't know anything was wrong with him, you'd never know it," said his longtime friend Grayson Lee. "He's one of the top middle infielders we have. He never lets CF or anything like that stop him. He's a very high-caliber baseball player."
His coaches and teammates are keenly aware of his illness, but they go about their business as normally as possible.
Luke primarily plays on the junior varsity this season, and also travels with the varsity team. He might be called on as a pinch runner or pinch hitter, said Mounties coach Matt Melson.
"First of all, he's not on this team as a fluke," Melson said. "He is as hard a worker as we have out here ... but the other thing is, he's so inspiring."
Kyle Eason has lived across the street from the McFaddens since they moved to Rogers. The senior Mountie said Luke exudes confidence and passion that motivates the other players.
"He's a winner. He doesn't like to lose," Eason said. "He works hard every day. He shows up and does his job. Stays late, gets here first. When you look at him, he's someone you want to be" like.
Luke's illness provides his teammates perspective.
"I'm the world's worst about thinking my day's not going real well, or had some problems at school or at home or whatever. Then you come here and see how he responds to everything, and he's just a light in everybody's day," Melson said. "It could always be worse, and just seeing him keeps me going personally. I know it does this whole team as well.
"I think the mindset is, 'If Luke can get out here with what he's going through, and give 100 percent daily, there's no reason I can't do that.'"
Living with CF
The McFaddens' life has centered on his daily treatments since Luke's diagnosis. Before the age of 2, that consisted of his parents pounding his back, sides and chest three times per day to break up the mucus in his lungs. He was fitted for a special vest that performs the same procedure when he turned 2.
"It's like a blood pressure cuff," Mike explained. "You put it on, and it squeezes your body and vibrates, but that was pretty scary for a 2-year-old."
Luke still uses the vibrating vest twice daily. On days he has morning weight lifting, his treatment begins at 5 a.m., with another in the evening.
"He went through a rough time in grade school where, over a three-year period, he spent the equivalent of one school year in Arkansas Children's Hospital in Little Rock battling some crazy bacteria that he picked up in his lungs," Mike said. "Then he was on IV antibiotics for about a year and half."
The reason for the port was so Luke could return home and do his IV treatments there instead of at the hospital, Michelle said.
"We decided that we could either live in the hospital or have home health care and learn how to do it," she said. "I learned how to access it. He would even go to sleepovers and take his IV, and he would do it himself or I would teach the moms. All the buddies that he has now, their moms and dads know how to do it."
Refusing to quit
The McFaddens moved to Northwest Arkansas 13 years ago, and it didn't take long for Luke to gravitate to baseball. He played in the Rogers Youth Baseball League, where he was awarded the prestigious Kyle Belknap Award for Courage.
"When I was a kid, I was always throwing the ball and playing catch. I've just always loved it," Luke said. "I've played since I was 5."
He refused to quit playing even in the midst of an almost two-year battle with a bacterial infection.
"He played a baseball game in the second grade while an IV was running," Michelle said. "We covered it with a big pad. He was the pitcher for machine-pitch. There was a needle in his chest. He just wanted to play baseball. So yes, we tried to keep it normal. Yes, he had a needle in his chest, but it was OK."
Several years later, and again treating an infection with an IV, Luke would remove the IV needle before a game, then reinsert it when the game ended.
"The meds were so strong, he would get sick," Michelle said. "He would be up to bat, call time, throw up, then go bat. Other parents were like, 'Your kid has the flu, and you need to get him out of here.'"
Dr. Astryd Menendez is Luke's primary care doctor in Fayetteville. She said his busy lifestyle and love of sports is not uncommon for cystic fibrosis patients who follow their doctor's guidelines.
"Luke will be 18 soon, so he is assuming a lot of his own care," Menendez said. "For patients like Luke who have control over their CF, they can enjoy a very active lifestyle."
Full exposure
Luke traveled with the team to Arizona recently, packing all his medications and his vibrating vest along with his baseball equipment bag.
Mike and Michelle made the trip with him, but Luke plans to attend a summer camp in Colorado with his buddies -- and without his parents.
"When he was first diagnosed at 8 months, we were panicked and freaked out, and everything went through our minds," Michelle said. "My gosh, we have to protect him. But as time went on, we realized that the only way to really protect him is to put him out there.
"We wanted to keep him in a bubble, but we knew he needed to be exposed to everything."
Luke is planning to attend college at either the University of Arkansas or Oklahoma State Univeristy in Stillwater, Okla., where a number of family members attended. He has a bright orange OSU decal attached to his pickup. He plans to major in business.
Until then, Luke will keep keep grinding and keep reaching for his goals. And he'll keep battling cystic fibrosis, hoping like thousands of others for a cure.
"You can't quantify what a kid like Luke means to our team," Melson said. "Honestly, I've never heard him say one thing about what he goes through on a daily basis, but we're all aware of it. Because we all know his story.
"We've all been inspired by what he does."
NAN Our Town on 04/07/2016