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What do you do if you have cerebral palsy, are 14 years old, part of an active family, and live in a ski town?
If you're Paige VanArsdale, you keep up. And often, you excel.
The Steamboat Springs, Colo., native swims, skis and generally does whatever her mom, dad, and 18-year-old brother, Kaleb, are doing. That doesn't mean it's easy.
"I think sometimes other people thought my parents were kind of mean, because when I would fall, they didn't help me up," said Paige. Instead, their expectation became her expectation: to get herself back up and moving. Paige's automatic response was to give a thumbs-up and cheerfully exclaim, "I'm okay!"
Until two years ago, Paige's right leg was significantly shorter than the left, and it turned inward. When Paige stood flat on her left foot, her rigid right foot balanced on its toes. She takes anti-seizure medication.
Paige's mother, Melissa VanArsdale, recalls that when she was pregnant with Paige, the baby would "spin around [in utero] every day at the same time." About 10 days before her due date, she just stopped. The obstetrician detected a very low heart rate, performed an emergency C-section and flew Paige to a neonatal intensive care unit in Denver.
While Paige's infancy seemed normal at first, she missed every developmental milestone. Melissa and her husband Derek were offhandedly told that Paige had mild cerebral palsy (CP). "We went online to research CP and found very scary information," Melissa said. "It covered a big umbrella of conditions."
CP is caused by damage or abnormalities inside a developing brain that disrupt the ability to control body movement, posture and muscle coordination. CP can also include seizures and problems with sensation, cognition, respiratory dysfunction, communication and/or behavior.
Melissa and Derek made a decision: even though she fell constantly and had other issues that come with CP, they would not coddle Paige. She would do whatever the family did. And at age three, they put Paige on skis. She worked hard to keep up with Kaleb, who encouraged and cajoled her. The family became involved in Steamboat Adaptive Recreational Sports (STARS); Melissa became so involved that she now is an employee. In spite of the specially-trained instructors and adaptive equipment, a day of skiing left Paige's back so tight she was unable to walk.
In 2011, as she researched treatments, Melissa found Children's Hospital Colorado orthopedic surgeon Frank Chang, M.D. "I was pretty adamant about seeing him," Melissa recalls. "Not only was he a pediatric orthopedic surgeon, his area is CP."
The family met with Dr. Chang, and Paige was assessed at The Center for Gait and Movement Analysis at Children's Colorado, where she recently returned for a checkup and physical therapy.
"The staff very much involved Paige in the discussion and decision making," Melissa said.
They presented the family with three options: do nothing, inject botulinum toxin ("botox") to relieve pain and relax the skeletal muscles, or undergo major orthopedic surgery on Paige's right leg. True to the family's go-big-or-go-home philosophy, they chose surgery because it promised the best long-term results for Paige.
So on Friday, April 13, 2012, Dr. Chang lengthened Paige's right calf and hamstring muscles, moved her patella down and outward and cut her right femur, inserted a plate and rotated the femur outward. After she was discharged from Children's Colorado, Paige spent seven weeks in a wheelchair. Kaleb made things a lot easier for her, even if he liked to do 'wheelies' with her in the wheelchair, Paige said.
Three weeks out of the cast (which was neon pink and green and bedazzled, a signature of Dr. Chang's medical team), Paige swam in the Steamboat Springs recreation center pool every day as part of her rehabilitation. Next thing she knew, Paige was training under coach David Franzel. She competed at the U. S. Olympic Training Center in the Jimi Flowers Classic 2013, an international meet hosted by U.S. Paralympics for swimmers with impairments.
Six months after her surgery, Paige was back on her skis. She was ecstatic; skiing didn't hurt any more. So of course, now she races. She goes to the course an hour ahead of practice to take runs on her own before her coach, Tommy Moore, arrives. She competed in the NASTAR ski racing national championship in Snowmass this past March and earned a gold medal for her age group in the adaptive field.
The surgery didn't just relieve Paige's pain and steady her stance; it enabled her to realize her own potential and fall in love with competition.
"Building Paige's confidence in sports has transferred to improving her confidence in school," Melissa said. "When she was told she would never write, she began writing in a journal every day and now she has the nicest handwriting in the family. When she was told she'd never read a chapter book, she began reading one every night. These challenges may take her longer but she's determined to master them."
The future is looking bright: Paige is off to high school this fall, and wants to be on the alpine ski racing team. She has set her sights on becoming a physical therapist.