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Shining bright beyond the spotlight
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Kristin Klemesrud is a model student and a role model for her peers.
Klemesrud, 20, is on track to graduate from the University of Northern Iowa in the spring, after just three years of college. She plans to apply for graduate school and get her master’s in social work at the same time her peers are receiving their undergraduate degrees. She’s made appearances on the dean’s list and was the recipient of a Carver Scholarship for the last two years.
In the summers between college terms, the Osceola native serves with AmeriCorps, where she works with 4-H camps in Clarke County. She provides 450 hours of service each summer for a small wage and a college stipend.
To meet her, one would never guess she was born with cystic fibrosis, or CF, an inherited disease that causes thick, sticky mucus to build up in the lungs and digestive tract.
Three years ago, Klemesrud was in the inaugural class of the University of Iowa Children’s Hospital and Iowa Hawkeyes’ Kid Captain program, a program designed to tell the stories of determination, strength, and hope of the children cared for at UI Children’s Hospital and their families.
Now entering its fourth year, the Kid Captain program has become a widely recognized part of every Hawkeye football game. Each Kid Captain receives a commemorative game jersey and has his or her story highlighted during the football season. In addition, home game captains spend an hour on the sideline before “their” game and are introduced at midfield prior to the coin flip. All of the Kid Captains receive special treatment during the annual Hawkeye Kids Day.
Kid Captains are nominated by their parents or legal guardians, who are asked to give a summary of their child’s history with UI Children’s Hospital. A multidisciplinary committee reads through the hundreds of nominations and selects the 13 Kid Captains for each of the Hawkeyes’ football games.
Cheryl Hodgson, manager of marketing services for UI Health Care and co-founder of the Kid Captain program, says she’s enjoyed seeing the response to the program continue to grow.
“The response to the Kid Captain program has been far beyond what we anticipated when we began in 2009. Families often tell us that their Kid Captain experience is a day that they will never forget,” she says. “Our faculty and staff are excited when one of ‘their’ kids is featured. We even hear from alumni who have moved to other states about how proud they are to have worked at UI Children’s Hospital.”
Having a day in the spotlight is something the kids don’t forget, she says.
“Recently, we heard from the mother of a former Kid Captain who said she was saving his jersey so he could show his children one day. To touch generations of families is incredibly meaningful for everyone involved in the Kid Captain program,” she says. “It’s truly an honor to know these amazing kids. They inspire each and every one of us to live life to the fullest.”
The Kid Captains are all ages and represent a wide range of specialties treated at UI Children’s Hospital. For many, their work with the hospital is ongoing as they continue to heal. We caught up with a handful of former Kid Captains to see how they’re doing now…
Kristin Klemesrud, Kid Captain 2009
Although her CF will always be something she has to monitor and treat, Kristin doesn’t think of herself as being “sick.”
“There are reminders of it every day, medications I have to take, treatments—but it’s just routine,” she says. “It’s something I know I need to do to stay healthy.”
Kristin has cystic fibrosis, or CF, an inherited disease that causes thick, sticky mucus to build up in the lungs and digestive tract.
The buildup of mucus makes it hard for her body to break down and digest food and also causes chronic infections in the lungs. Not too long ago, children born with this fatal genetic disease rarely made it to elementary school. Today, thanks to specialized care like that available at University of Iowa Children's Hospital, Kristin not only expects to live into adulthood, but also enjoys a life full of school, sports, and community activities.
Her father, Kevin Klemesrud, says there are stark reminders that CF will always be a part of her life. Though she’d been hospitalized in the past for routine “tune-ups,” he says the harsh Iowa heat and humidity created a “minor setback” for Kristin this summer. Working outside for long time periods created a decline in his daughter’s lung function and led to a lengthy hospital stay because of her condition.
“Kristin isn’t in the Children’s Hospital anymore, but University of Iowa hospitals continue to be a blessing to our family,” Kevin says. “Cystic fibrosis, as a chronic illness, can be scary but Kristin still faces it with courage. As an adult she worries about the future but I remind her not to ‘borrow trouble.’
“Each day can be a blessing,” he says. “Faith in God, courage of one’s self to persist, prayer and confidence in the doctor’s care, and a purpose and passion in life to serve and use her talents are all things I see in Kristin.”
Nikolas Ball, Kid Captain 2009
In March 2008, 4-year-old Nikolas Ball started running unexplained fevers, vomiting, and suffering leg pain so severe he had difficulty walking. By April, Nikolas was diagnosed with Stage IV neuroblastoma, a form of childhood cancer that starts in the nervous system.
Treatment began immediately at a hospital in Des Moines, and his physician referred the Ball family to University of Iowa Children's Hospital for its expertise in stem cell transplants and pediatric radiation treatments. After meeting with the medical team, his parents, Robin and Jimmy, "decided that UI Children's Hospital was the best place for our child."
Now, Nikolas, 8, is “doing great, he’s been ‘clear’ for three years,” says his mom, Robin Ball. “He no longer has to have scans; we just come back to UI Children’s Hospital every six months for his regular checkups.”
The cancer hindered Nikolas’s growth, so he’s given growth hormone shots daily.
“He’s grown an inch and gained five pounds in three months, so they’re really helping,” Robin says.
“He’s definitely a fighter,” she adds. “He’s not much of a talker, but he’s a real fighter.”
Andrew Niles, Kid Captain 2010
Andrew (“Drew”) and his parents first came to UI Children’s Hospital shortly before Drew’s first birthday after his parents became concerned that their son seemed much smaller than other children his age.
UI geneticists found that he was born with Chromosome 4 ring syndrome, where the ends of the chromosome are deleted and the two broken ends have rejoined to form a ring shape. Chromosome 4 ring syndrome can cause a range of physical problems. In Drew’s case, it caused his small stature.
Drew was lucky. The test to determine his genetic disorder had only become available in 2007, the year he was born. In fact, their doctors could only find a record of one other child with the same defect.
Now age 5, Drew remains an “active patient” at UI Children’s Hospital. He’s been on growth hormone shots for more than a year and has grown three inches, says his mom, Kristin Niles. He sees a speech therapist—he initially didn’t talk much but “now he talks a mile a minute,” she says.
“He’s really made some huge strides this past year,” Kristin says.
She says doctors weren’t sure how the growth hormone would work with Drew—since his chromosomal abnormality was so rare, she says, there weren’t any documented cases of kids getting the growth hormone shots and whether they worked.
“Now I can see it was all worth it,” Kristin says.
Beckham Scadlock, Kid Captain 2011
The monumental moments in Beckham Scadlock’s life aren’t the same as for most any other 5-year-old.
The past 12 months have been his most stable ever, says his mom, Kim Scadlock. He went his first year without one overnight hospital stay. His cardiology appointments have been scaled back to every six months. He attends preschool full-time.
Beckham Scadlock, a Kid Captain in 2011, is doing great with the heart transplant he received during his first year of life. He can now focus on more joyful things like developing the hands of a wide receiver. Photo by Tim Schoon.
“For what he’s been through, he’s doing really well,” Kim says.
Beckham was very sick when he was born in West Des Moines. He had trouble breathing and a heart murmur. He was transferred to a larger facility where doctors diagnosed mitral valve and tricuspid valve stenosis. His heart was barely working and was unable to infuse his blood with life-giving oxygen.
Five days after he was born he was flown via medical helicopter to University of Iowa Children's Hospital and immediately placed on the heart transplant list. "Doctors said that was his only option," Kim says.
About 10 days later, a donor heart became available and their young son came through the eight-hour surgery with flying colors.
The big moments are huge for Kim and the rest of the family.
“For most of his life we were in the hospital overnight at least every two to six weeks,” she says. “It became such a part of our lives. I remember sitting in the ER once looking at this plaque written in both English and Spanish, and I had memorized it. All of it. I don’t even speak Spanish, but we’d seen it so many times I had memorized it.”
Although Beckham balks at taking his rejection-fighting medications—he has to fast before and after each dose—Kim says her son has really come a long way.
“Everything he’s gone through, he’s done so gracefully,” she says. “You never, ever think about what you would do until you’re in the situation but for me, and for Beckham, this is just who Beckham is. I can’t imagine a different Beckham, and I don’t think he can, either.”