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On an unseasonably warm Sunday last month in Freemont, N.H., 22 teenaged girls took their positions on a pristine turf soccer field surrounded by tall pines and a copse of white birch trees straight out of a Robert Frost poem. The girls were playing in the top division of the U.S. Soccer Federation-affiliated New England Premiership club league, at a showcase scrimmage for a handful of college coaches in the stands. The whistle blew, and Kate Marshall, the center midfielder in the powder blue Seacoast United uniform, was off — a blur of rosy cheeks and blond hair, her ponytail whipping as she ran up and down the field. The 15-year-old from York, Maine, looked like any other athlete out there and played better than most, sprinting all-out down the sideline to launch a cross in front of the goal, crashing without restraint to the ground in a race to win a loose ball and patrolling the center of the pitch like a cop on the beat, taking her time to read the field and dish out pass after pass to her teammates while pouncing on opponents and stealing possession at a moment’s hesitation.
Of course Kate isn’t like any other athlete out there. She was the first to the huddle at halftime and the only one to trot back to the goal and fist-bump the keeper at the game-ending whistle. She was also the only one out there going all out on 90-percent lung capacity, a result of the genetic disease cystic fibrosis.
Kate wasn’t asking for pity, or coddling or special attention. In fact, she rarely ever talks about the insidious, life-threatening condition she was born with. But in her own quiet way on the field that day she was shouting to an unseen opponent: You’ll never beat me. I’m going to work twice as hard and be twice as good. I’ll show you.
A sophomore at York High, a small high school of about 700 students located three blocks from the Atlantic Ocean and a 10-minute drive from the border of live-free-or-die New Hampshire, Kate plays soccer and lacrosse for the Wildcats and competes year-round for her club soccer team. This fall, she earned a starting position at center midfielder for York’s varsity squad after playing jayvee last year and was selected by coach Walter Caldwell for the team’s Most Improved award, based on a laundry list of qualities including, what he called, her “consistency, grit and humility.”
Kate has a 3.30 grade point average, works a summer job at a beachside snack bar, coaches youth soccer in the fall, has a boyfriend on the football team, follows Beyoncé on Instagram, and is learning to drive. (Have her tell you the proper way to hit a moose that steps into the path of your car, required knowledge to pass the driver’s test in Maine).
In the end, what makes Kate Marshall different from any other typical teenager is not the single gene that causes her disease, but how she has handled that disease.
“I’m almost thankful for CF sometimes because of what I’ve learned having it,” Kate says. “Not necessarily physically, but mentally it’s taught me so much. It has taught me to be independent, to stay positive all the time, and just always keep your eye on the prize. You can’t experience happiness without sadness and it’s so important to experience both, I think.”
Cystic fibrosis is a chronic genetic illness that, if left unchecked, can wreak havoc on the lungs and digestive system. In the 1950’s, children with CF were not expected to live long enough to attend elementary school. But today, according to the Cystic Fibrosis Foundation, approximately half of the estimated 30,000 people with CF in the United States are 18 or older, and the median predicted age of survival is rising steadily. Since 2002, that median age has increased by nearly a decade: from 31.3 years in 2002 to 41.1 in 2012.
That’s the year a drug called Kalydeco was approved for use in four percent of the CF population. And this fall, the wheels were set in motion for the approval a new cystic fibrosis drug—one that affects a much wider swath of the population—including Kate Marshall.
“Every day technology is improving and it’s giving you such a longer life,” says Kate. She was diagnosed with cystic fibrosis at the age of eight months in the winter of 2000. “It’s so much different than it was 20 years ago,” she says. “I’m so lucky to be born in the time period that I am.”
If Kate Marshall were ever to get a tattoo, it would probably be an inspirational quote. Her bedroom walls are covered in words that motivate, reassure and fortify. On a chalkboard in the kitchen is a pearl from Confucius: “Our greatest glory is not in never falling, but in rising every time we fall.” Even washing your hands or rinsing the dishes is an opportunity for inspiration in the Marshall household. A tiny engraved silver tablet next to the kitchen sink reads, “Don’t be afraid to fail. Be afraid not to try.”
Kate’s personal motto? “The victim never wins.”
“That’s what I’ve always been told, and it’s true and it’s something I’ve always carried with me,” she says. “I just love working hard and I love being surrounded by positive people, not people who ever feel sorry for me, because the last thing I ever want is to be sorry for myself.”
Of course, Kate Marshall is much too practical to ever get something as unnecessary and look-at-me as a tattoo, but if she were to ever get inked, it certainly wouldn’t be with a pattern of butterflies or buttercups or any other frilly nonsense. Don’t get her wrong, she likes that stuff much as the next 15-year-old girl, but she doesn’t have a ton of time for butterflies or buttercups or any typical teenage girl drama. Like most CF patients who have had to grow up faster than their peers, Kate has certain priorities most others don’t stop to think about: Like breathing.
At 5:50 a.m. each school day, Kate rises to do the first of her twice-daily physical therapy treatments. Before she swallows an alphabet’s worth of vitamins and a half dozen pills, including five pancreatic enzymes that will allow her body to digest the nutrients in her breakfast, she heads to the basement den. There, she hunkers down, cross-legged on the couch, straps on what looks like a life vest and plugs it into the wall outlet. At a cost of $8,000, the device is not something you would ever take into the water but the vest really is a life preserver of sorts: when she switches it on, it emits a low hum, vibrating to help shake loose the mucus that clogs her lungs and can make her vulnerable to infection. While it does its work for half an hour, Kate uses a nebulizer to inhale two steam mist medications that help to open her lungs. Before bedtime, she’ll repeat the procedure. It’s a tedious routine but she’s rarely alone while doing it. Her company during these treatments is usually some combination of her younger brother, Chase, the family dog, Hazel, and the Real Housewives of Beverly Hills.
Chase, 12, would rather play ice hockey or lacrosse or go skeet shooting than watch the Real Housewives of Anywhere, but he’d do anything for Kate and cheerfully joins her on the couch for what he calls their “hang out time.”
“He’s impacted me in more ways than he knows, I think,” Kate says. “He always keeps a smile on his face and he’s always by my side at the hospital or just sitting next to me during PT. It’s those small things that he does for me that make him such an extraordinary brother.”
Chase knows that those accumulated hours by his sister’s side are special. “I don’t think other siblings get that bonding time that we get doing that,” he says. And he can’t help but have learned a thing or two from watching Kate over the years, either.“ She always sets an example of how to work hard and stay tough,” Chase says.
And she’s impressive on the field, too. “She’s really good at soccer and she’s competitive—she likes to win but she also plays because she really likes the game,” Chase says. “And she always sticks with it, even if she doesn’t feel great. She’ll always go out there and play hard,” he says. “I’m always proud to say that’s my sister out there.”
Kate’s earliest memories of soccer are of picking daisies on the sideline and holding hands with the referee during rec league games. In third grade she moved up to the town travel team and by seventh grade she was playing for the year-round Seacoast club. Last fall she joined the high school squad and this year, came off the bench to start for varsity.
Years ago, doctors would have told cystic fibrosis patients to limit their physical activity and even sit out of gym class, but by the time Kate was born, in the summer of 1999, the conventional medical wisdom had changed: Doctors today know that cardiovascular exercise helps keep lungs strong and clear and that being part of a sports team can be immeasurably valuable for the mental health of a patient dealing with an isolating disease.
“Being active is almost like a third PT session of the day,” says Kate. “I’m really lucky to be able to be successful at a sport that helps me and my body.”
Kate’s teammates and coaches might argue that they’re the lucky ones.
“She tried soccer because we thought soccer would help CF, but we realized in time that CF really did help soccer,” says her mother, Martha Marshall. “She has a resiliency and an ability to overcome any kind of obstacle that she has—to power through things—she does that on a daily basis with her chronic health condition. And it really does spill over onto the soccer field.”
When uniforms were doled out this fall, Kate went straight for number 13—it’s a legendary number in the York girls’ soccer program, one that’s been worn by several players who went on to play soccer in college, and coach Caldwell’s players know that wearing it carries a weight of responsibility.
“Not too many people wear that number after someone had a phenomenal career,” says Caldwell. “And she just stepped up and took it—I didn’t say a word to her. Oh, it must have been about 10 or 11 days later when she broke into the starting lineup, and getting off the bus, I just tapped her on the shoulder and said, ‘Kate, you chose the right number. You’re making everybody around you play better and that’s what someone who wears number 13 needs to do.’”
Kevin Wyatt, Kate’s jayvee coach last season, wasn’t surprised to see her excel on the varsity this year.
“She ran my team, she was the center mid, she was the center everything,” Wyatt says. “Every time we had success it went through Kate. Every time we did something well, Kate was involved.”
It was a snowy Friday at 4 p.m. on Feb. 18, 2000, when Patrick and Martha Marshall got a call from their pediatrician asking them to come in to the doctor’s office.
After closing her office door, the doctor told the young parents that their small daughter did, indeed, have cystic fibrosis.
“As parents we all have that movie of what our kid’s future is going to be and at that moment it went dark,” Martha says.
But the couple was quickly given a reason to take courage. The next words out of the doctor’s mouth were, “It could be a lot worse.”
Indeed, a cystic fibrosis diagnosis today means something much different than it would have meant 25, 35, 45 years ago.
“If I had been diagnosed with CF when I was born in 1969, my parents would have been told their son is most likely not going to live to see his 10th birthday,” says Patrick. “When Kate was born, we were given a reason to hope. We were given a job as mom and dad to keep this kid as healthy as humanly possible for the day that a drug comes along that will make her disease manageable so that she can truly have the dream of having her own family and living a full and complete life. That dream is coming true.”
That dream took another step closer to reality when, a little over a month ago, Cambridge, Mass., -based Vertex Pharmaceuticals submitted a new drug application to the Food and Drug Administration that could drastically improve Kate’s life and the lives of 50 percent of all CF patients who, like her, have two copies of the most common gene mutation that causes cystic fibrosis, F508del.
The company requested a fast-tracked review of their cocktail of two medications that were shown in clinical trials to significantly improve lung function in double F508del patients. If granted, that could shorten the FDA review timeframe from 12 months to eight — just in time for Kate’ 16th birthday in June.
It’s a scientific development that Patrick has spent his professional and personal life tracking. A former telecommunications and technology headhunter, he shifted his expertise to the biotech and pharmaceutical world after Kate was diagnosed in 2000, founding a firm focused on helping drug companies find and hire the scientists who can help bring an idea from a concept to an available drug. He credits former NFL quarterback Boomer Esiason for the inspiration to dedicate his professional life to helping bring drugs to market that can help cure life-threatening diseases, including CF.
Boomer famously appeared with his young son Gunnar on the cover of SI in 1993 for a story about his dedication to beating the cystic fibrosis diagnosis Gunnar had been given. (Gunnar, now 23, is a high school football coach on Long Island who writes eloquently about living with CF).
Feeling lost and distraught at his daughter’s diagnosis, Patrick tracked down Boomer’s email address and sent him a note asking how he was able to have such a successful career in the midst of his son’s diagnosis. “I really was struggling with that as a professional in the work place,” Patrick says. “I wrote that email just to get some crazy, sad feelings off my chest. I didn’t expect a reply.”
But just days later, he got an email back from Boomer that he now keeps framed in his office. “It changed my entire life,” Patrick says. It boiled down to three main pieces of advice: One, learn everything possible about the disease. Two, make a difference and start fundraising for the cystic fibrosis charity. “But the last thing was that he wanted me to make a personal difference,” Patrick says. “To find a way, professionally, to make a difference.”
“It’s really rewarding to be a father of someone that has a disease like CF and is also seeing the [scientific] process that’s happening and even being able to work with these companies to help them become successful in finding the difference makers that they need.”
Last fall, Kate started feeling short of breath in games and practices and had to be admitted to the hospital. Hooked up to an IV, where she received antibiotics through a PICC line, she missed six games while her team made it to the Class B playoffs before getting knocked out in the semifinals. Tethered to yet another machine that kept her isolated while the world went on with out her, she felt helpless.
“When I’m in the hospital and see all my teammates and kids at my school going on with their lives, it’s definitely a lonely feeling. I just stare at my PICC line and get really frustrated,” Kate says.
She wasn’t going to let it happen again. So this summer, Kate took two weeks off from her summer job, peeled herself away from sunny days on the beach with her friends and voluntarily hospitalized herself so that she could minimize the bacteria in her lungs in advance of the soccer season. No one likes the hospital, but for a fiercely independent kid like Kate, this was like volunteering for jail time.
“In the hospital you’re completely reliant on everyone around you and that’s probably the most difficult thing to comprehend,” she says. “I can’t even shower without someone unhooking me from my IV, wrapping it in Saran wrap and then tape.”
Between that proactive decision and training all summer, her work paid off. Every moment that she wasn’t in the hospital last summer, Kate and her teammate and good friend Maddie Amidon, York’s starting sophomore striker, would go for runs on the beach and work on foot skills to prepare for the soccer season ahead. “We just were so determined to make an imprint going into this year,” Kate says.
She certainly made an imprint on Caldwell, who quickly recognized that Kate had put in the work to reach the next level and instantly put her on the varsity. But more than her physical fitness, he was impressed with her humility and business-like attitude on the field.
“She’s a field general. That’s what she does out there. It’s a quietness that she does it with, and an aggressiveness too,” says Caldwell. “You don’t put all of your accolades on the refrigerator. You store them somewhere else—you store them in your heart. And that is something this girl does. She cares about what she does but she doesn’t spend any time jumping all over the place if she scored a goal or got a great assist. She would just downplay that to the point where it’s like, ‘That’s my job, that’s what I do. I’m good at it and I want to be good at it and I want to be better at it.’”
She also makes the teammates around her better—and not just at soccer, says Wyatt.
“Every day, be it on the field, be it in school, be it in life, you’re going to meet with challenges and Kate is the epitome of hurdling through any challenge,” he says. “From freshmen to upperclassmen, [her teammates] have to realize how amazing it is that she comes out here every day like everybody else while she’s dealing with monumentally more prior to and post practice. And she does it in such a delicate and charismatic way. She doesn’t ask for sympathy she doesn’t ask for empathy. She moves forward with her challenges and she rises above all the time.”
Kate’s hope for the future is to play soccer in college, and right now Division III Endicott College in Beverly, Mass., is at the top of her list.
“I have no reason to believe Kate can’t play at the next level,” Caldwell says. “I’ve had several kids go on to play college soccer. She fits in to their skill level, their intensity, their desire.”
Her parents simply want her to live a full life and pursue anything she would pursue with or without CF in the picture. Whatever her future holds, Kate wants to pay forward the lessons of strength she has learned dealing with her disease over the years and the lessons of kindness and compassion that she has learned from her family, friends and doctors.
“I want to help people with difficult times like I’ve dealt with,” she says. “I’m not sure necessarily where, but I want to make an impact in the world for sure.”
Cystic fibrosis has been called an invisible disease. Most of the people on the field and in the stands during the Seacoast scrimmage on that sunny day back in November had no idea the player in the powder blue jersey playing center mid was dealing with a chronic, life-threatening condition—and Kate wouldn’t have it any other way.
Yet in her refusal to let CF define her, Kate was teaching all those spectators and players a tremendous lesson without saying a word. Every pass she launched across the field was a message in a bottle carrying the words “NEVER GIVE UP.” Maybe not today, maybe not tomorrow, but someday in the future the currents would wash her bottle onto shore and her teammate, her opponent, a parent on the sideline, would find out she had cystic fibrosis, would maybe read an article like this one and find out how serious CF is, would somehow connect her with the disease and think back to that unseasonably warm scrimmage in November and the brilliant white of the birches in the sun and the arc of her passes across the sky and then her message would finally hit home: “That girl has cystic fibrosis? But she looks as strong as anyone out there.”
She is. Stronger, even.