Upon first glance, Tristan Popillion appears to be an average healthy, happy, energetic 11-year-old kid.

He is.

For the most part, that is.

One thing sets Tristan’s lifestyle apart from other children. He has cystic fibrosis.

“He was diagnosed when he was fifteen months old,” said Amy Popillion, Tristan’s mother and senior lecturer in human development and family studies at Iowa State. “Tristan was small when he was born, six pounds, which wasn’t really concerning because our first son was also six pounds at birth. However, as Tristan got older he grew, but not at the rate expected. He was initially in the 25th percentile for weight, then he dropped to the 15th, then the 10th until finally he dropped off of the growth charts around his one-year checkup.”

At his one-year wellness checkup, Tristan weighed 15 pounds. Amy informed the doctor that baby Tristan ate quite a bit and he also had an “unusually high amount of diapers.”

Three months later, after trying to supplement his diet and still getting no results, Tristan’s doctor, Dr. Edward Nassif, recommended testing Tristan for cystic fibrosis.

Cystic fibrosis is “a life threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria,or germs, to get stuck in the airways, which causes inflammation or swelling and infections that lead to lung damage,” according to the Cystic Fibrosis Foundation.

“When he was first diagnosed, it was very scary,” Amy said. “Only about 30,000 adults and children in the U.S. have CF so it isn’t something that people are always familiar with. Our experience with CF was of a co-worker Jason [Tristan’s father] worked with who had died from CF and another story of a young 11-year-old girl who had also died from it.”

In 2001, around the time Tristan was diagnosed, the median life expectancy for cystic fibrosis patients was 27. In 2009, according to the Cystic Fibrosis Foundation, the median predicted age of survival was in the mid-30s.

To help deal with his cystic fibrosis, Tristan’s day revolves around taking medications such as antibiotics, bronchodilators to help open up the airways for easier breathing and anti-inflammatory medications to reduce inflammation in the lungs. He also must take enzymes before consuming any food due to the fact that mucus in CF patients can block tubes in the pancreas.

In CF patients, “the digestive enzymes that the pancreas makes can not reach the small intestine. These enzymes help break down the food that is eaten. Without them, the intestines can not fully absorb fats and proteins. This can cause vitamin deficiency and malnutrition because nutrients leave the body unused. It also can cause bulky stools, intestinal gas, a swollen belly from severe constipation or discomfort,” according to the National Heart, Lung and Blood Institute.

“Usually I get up in the morning, take my medicine and I have to take my enzymes before I eat breakfast,” Tristan said. “Then I go to school, and at lunch I have to go down to the nurse’s office every day so I can take enzymes before I eat. Then I do the rest of school and when I go home, if I want to have a snack, I take another enzyme. My day is crowded with enzymes. If I don’t take them before I eat though, my stomach will hurt.”

He also must do daily treatments wearing a high-frequency chest wall oscillation vest, which helps clear the air passage of the lungs of the thick sticky mucus cystic fibrosis patients must deal with.

“It’s almost like I have a cold all the time,” Tristan said when describing his condition. “I have to wear the vest usually for around 25 minutes. It’s kind of annoying and sometimes it hurts. I’m supposed to use it twice a day, but that’s only when I really need it. Usually I only have to use it once a day.”

For the most part, Tristan has been on “the pretty healthy side of the spectrum,” Amy said.

“He has only come close to having to be in the hospital once,” said Jason, Tristan’s father. “That was when he had nutritional failure. His lung function had gone down 30 percent over a six month time period. If this had continued, he would not have had enough body weight to sustain him or fight it all off.”

Many CF patients have to undergo lung transplants in their lives as a result of the damage infections have on the lungs. Tristan’s family does their best to prevent Tristan from having to go through such a procedure.

“The key to taking care of someone with cystic fibrosis is getting any infections they may have eradicated as soon as possible,” Jason said. “Every time they get sick, it creates damage to their lungs. The less damage they have to their lungs over their lifetime, the less likely they are going to need a lung transplant.”

Tristan became involved with Dance Marathon about seven years ago while at the Iowa City Medical Center. Since attending his first Dance Marathon, it has become one of his favorite events of the year.

“The doctor said it’s good for me to wrestle, jump around and be active to get my lungs cleared,” Tristan said. “I get to do a lot of that at Dance Marathon. It’s a lot of fun.”

Amy and Jason have both noticed how much fun their kids have at Dance Marathon in the time they have participated. Jason and Amy said Tristan and his siblings look forward to it “perhaps even more than Christmas.”

“The minute we leave, they’re already asking, ‘When’s the next one, Mom?’ It’s great to see them have so much fun there,” Amy said. “Dance Marathon is truly a gift to our family. It is something that my kids look forward to every year and is one big way that makes having such a sucky disease more bearable. In many ways we are very fortunate because even with cystic fibrosis, Tristan is overall living a very healthy life. Many people with CF are not so fortunate and deal with being in and out of the hospital on a regular basis as well as hours of treatments at home on a daily basis. Of course, these things could come in the future for Tristan, but for now, we are doing all that we can to keep him healthy. One of our favorite sayings in the CF community is that someday CF will stand for ‘Cure Found.'”