A teenager’s take on living with cystic fibrosis

CF5WBy Katie Riley

It's easy to look up to Austin Gordon. At 14, he stands almost 6 feet tall and wears a size 14 shoe. But it's not only his size that makes this Crofton eighth-grader impressive.

Each day Austin faces the fight of his life as he battles to breathe, and his perseverance in the face of adversity is characteristic of someone far beyond his years.

A typical teenager who fights with his sister, loves video games and has a particular weakness for jellybeans, Austin also has cystic fibrosis, a recessive genetic disorder that affects the lungs, pancreas, liver and intestines. Cystic fibrosis patients suffer from breathing complications because of thick, sticky mucous that builds up in their lungs. The result is frequent chest infections and coughing.

Great progress has been made for the treatment of cystic fibrosis, but there is no cure. A child diagnosed 40 years ago may not have lived past young adulthood, but today the Cystic Fibrosis Foundation estimates that the average life expectancy of a CF patient is 37.

Austin, however, lives life to the fullest. He doesn't seem to give much thought to the future.

"Most people don't even know I have [CF]," he says. "And my friends treat me the same," which is what matters the most to him.

He loves watching football and dabbling in technology (he is currently building his own computer), and he recently started dating.

"It's hard to forget I have CF, because of the treatments," he says, "but I'm able to stay positive."

Any given day with CF

On an average day, Austin gets up at 6 a.m. for therapy, which consists of wearing a vest that vibrates and clears his chest walls of excess mucous. He will take 30 pills CF1Wthroughout the day, along with pancreatic enzymes that help him digest fats and proteins, and he will complete three 35-minute nebulizer treatments. Before the day is over, he will do another vest session, as well as run with his dog Wally — an activity that is vital to Austin's well-being.

Regular exercise is strongly encouraged for CF patients, as it helps keep the lungs clear and strong. Austin is always moving, a fact that earned him the nickname "Feets" in utero for his constant kicking. The teen plays soccer year-round and has backpacked portions of the Appalachian Trail with his father. He competes in mountain bike races, and his passion for watersports, like wakeboarding and boogie boarding, is insatiable.

"Austin is very healthy for having CF," says his mom, Laura Gordon. "But he's your average teenager. He's not going to do his vest if I don't tell him to."

Austin's preemptive approach to his health has impressed his team of doctors at Johns Hopkins Hospital on numerous occasions. During the summer of 2013, Austin's lung function was down. After a round of antibiotics wouldn't help, Austin was given the choice of more at-home treatments or a weeklong hospital stay. He chose the hospital stay, telling the doctors, "Let's do this. I want to start my summer."

In the car on the way home from the hospital, he reminded his worried parents, "If I have to go back, I guess that's OK."

"Don't expect Austin to feel sorry for himself," Laura says. "He is a great patient. It's all he's ever known."

Helping to find a cure for CF

Austin was born with no outward signs of disease but after just two weeks, it was apparent something was gravely wrong. He couldn't gain weight and his pediatrician classified him as failure to thrive. When a doctor suggested Austin be tested for cystic fibrosis, his parents were devastated.

"When you get that phone call, it immediately calibrates you," Laura says. "Nothing will ever affect you the same way again."

With no family history of cystic fibrosis, Austin's parents immersed themselves in learning as much as they could about the disease.

Laura is a tireless advocate for her son and champion of CF research. She is on the Advisory Board of the Cystic Fibrosis Foundation and is a member of the Volunteer Leadership Council of the organization. Each day she is committed to researching CF developments and counsels other families about their own CF diagnosis.

"Laura has helped families so that they can feel the same relief and hopefulness. She's the connector, and an inspiration for so many others out there," says Ann Krulevitz, associate executive director of the Maryland Chapter of the Cystic Fibrosis Foundation and a close family friend.

"Mom spends hours on the computer each day," Austin says. "I tell her she needs to get a job," he jokes.

But Laura reminds him that she has a job, and it is to find a cure.

"There's really no better investment for my time," she says with a smile.
Laura admits that she has occasional moments of uncertainty, but her ability to look forward propels her through each day. "If I can't be positive, how can I expect my child to handle it?" she says.

Since cystic fibrosis only affects about 30,000 people in the U.S., the National Institutes of Health has classified it as an orphan disease, and CF receives no federal funding. Research for a cure depends entirely on private donations through the Cystic Fibrosis Foundation.

CFTeamFeetsWGordon's make Great Strides

The Gordon family is doing its part by raising record amounts each year for CF research. Every June they take part in the Cystic Fibrosis Foundation's Great Strides Walk. Last year their team, Team Feets, was the number one fundraiser in Maryland, raising over $60,000.

"Thirteen years ago, we decided to make the walk a fun family event and had a few friends over," Laura says.

But what began as a small affair has now morphed into a daylong celebration with dozens of families and a post-walk celebration at their home. Team Feets had 122 walkers last year, and this year, it has been designated a National Family Team, which means others across the country will be walking for Team Feets in their home cities.

For the Gordons, raising awareness about Cystic Fibrosis is a family affair. Both parents are graduates of the U.S. Naval Academy, and their can-do attitude has rubbed off on Austin and his younger sister Kate, 10.

Kate mans a rest stop at an annual bike ride for CF, and she recently created artwork to be used for fundraising materials.

Both sets of grandparents are involved, and the Gordon's impact on the community is far-reaching. Crofton Elementary, Austin and Kate's elementary school, has hosted a hop-a-thon to raise money for CF for the past nine years.

"Even though we're only raising a small amount, every penny makes a difference," Austin says.

Recent breakthroughs offer new hope for CF patients, and the FDA recently approved the drug Kalydeco, which all but cures Cystic Fibrosis for 4 percent of patients with a certain gene mutation. Though the drug is not a fit for Austin's type of CF, he has hope that the chance of finding a cure during his lifetime could be a reality.

"I do think there will be a cure. It may not be there tomorrow, but it will be there eventually," he says.

In the meantime, Austin will keep fighting.

"It's hard work, and I can't ever take a break," he says, "but I don't think CF holds me back."


What is Cystic Fibrosis?

Cystic Fibrosis, also known as mucoviscidosis, is a recessive genetic disorder that critically affects the lungs, but also the pancreas, liver and intestine. CF is caused by a genetic mutation for the protein cystic fibrosis transmembrane conductance regulator (CFTR), which regulates the components of sweat, digestive fluids and mucus in the body.

Cystic Fibrosis is most common among people of Central and Northern European ancestry. Symptoms include poor ability to gain weight, salty tasting skin, frequent chest infections, coughing and shortness of breath. It is diagnosed through newborn screening, sweat testing and genetic testing.

How You Can Help

Great Strides is the Cystic Fibrosis Foundation's largest fundraising event. Each year more than 125,000 people participate in walks in hundreds of cities throughout the country.

This year's Great Strides walk in Annapolis will be held on June 6 at the Navy-Marine Corps Memorial Stadium. It is an easy 1-mile walk with children's activities, food and fun for the whole family.

Team Feets welcomes anyone who wishes to walk with them at this great event. For more information about Austin Gordon, Team Feets, and the Great Strides walk, visit the Team Feets web page or the cycstic fibrosis website