Watch 6-year-old Kenley Teller snowboard down a slope and you’ll notice two things right away: a big smile on her face and her fiery red hair billowing in the wind beneath her helmet. What is not apparent are her two prosthetic legs.
“She’s free when she snowboards,” said Kenley’s mother, Mary Teller. “I don’t want to say she feels normal, because how do you define normal anyway? She may need to do things a little different than other people, but she can still do them. I’m constantly in awe of her.”
An unexpected diagnosis
Kenley was born with an incredibly rare condition called popliteal pterygium syndrome, which occurs in only about one in 300,000 people. According to Kenley’s mother, there are less than 100 cases in the U.S. Most people with the disorder are born with a cleft lip, cleft palate or both. For Kenley, she was also born with webs of skin between her fingers, toes, eyes and legs.
“When Kenley was only 2 weeks old, we were told she would need to have her left leg amputated because of her condition,” said Teller. “At the time, we weren’t ready to accept that, and so we got a second opinion.”
For years, the family explored various treatment options for Kenley. Their family moves often because Kenley’s father is in the military, and so they were referred to children’s hospitals up and down the East Coast for care. Unfortunately, many of the procedures they tried didn’t yield great results. By the time Kenley was 3 years old, the family had exhausted most of their options. She had undergone countless surgeries, procedures and braces, but Kenley still faced mobility issues.
The family decided to move forward with a bilateral disarticulation, or an amputation of both of her legs through the knee.
On Valentine’s Day in 2014, she underwent the procedure.
“She’s a very resilient child,” said Teller. “Only two weeks after the surgery, she was walking on her knees. Weeks later, she was fitted with her first prosthesis.”
A big move
In 2015, the Teller family moved across the country from the East Coast to DuPont, Washington, for a job transfer. Kenley had come a long way in the year after her amputation, and she was ready to embrace all that Washington had to offer.
Kenley needs to be seen by a number of providers due to her condition, including physical therapists and craniofacial specialists. Soon after making the move, they found their new medical home at Seattle Children’s, which they picked so Kenley could receive all of her multidisciplinary care in one place.
Every year, Kenley needs to be fitted with new prosthetics, and so her first few visits to Seattle Children’s was with the Orthotics and Prosthetics team and physical therapists to help her learn to walk on her new prosthetics. Soon after, she began physical therapy at Seattle Children’s South Clinic, which was closer to home for the Teller family. Every couple of months she went to appointments to help further her balance and mobility where she made tremendous strides.
“When Kenley first came to us, she had new prosthetics fitted,” said Cathy Graubert, physical therapy manager at Seattle Children’s. “She was just beginning to learn how to use them. We had lots of appointments working on the fit and gait training. It’s hard to have one leg amputated, but to have both is really challenging. She’s an amazing girl.”
A unique opportunity to hit the slopes
It was through Seattle Children’s that a unique opportunity was also presented to Kenley. Six years ago, Graubert, in partnership with Outdoors for All, an organization which provides adaptive and therapeutic recreation programs for children and adults with disabilities, started Ski Day for patients at Seattle Children’s, an opportunity for children and families to enjoy a day on the slopes free of charge. Ski Day offers children with disabilities a chance to experience the thrill of skiing or snowboarding no matter their condition.
For Kenley, the opportunity was too good to pass up.
“She has no limitations, and we don’t want to set boundaries,” Teller said. “Whenever we think there may be something she won’t be able to do, she proves us wrong. Having Kenley has opened our eyes.”
Last year was Kenley’s first time snowboarding and she was a natural. This year, she’s ready to push her limits even further. She attended Ski Day for a second year hoping to advance her skills even more.
“My goal for Ski Day is that everyone is happy by the end of the day,” said Graubert. “It always happens. Kenley took to snowboarding like you wouldn’t believe. She learned as fast as a child who does not use prosthetics.”
“She’s just incredible,” said Teller. “She had so much fun last year that she’s since taught her little sister how to snowboard. She’s fearless.”
Although Kenley might not snowboard in the same way as other people, she’s found a way to adapt.
For Kenley and her family, Ski Day is another milestone in a larger story.
“This is our journey and our life,” said Teller. “It’s not necessarily what we envisioned, but we’re going to make the best of it.”
To other families who may be in a similar situation, Teller encourages others to keep pushing limits.
“You are your child’s biggest advocate,” said Teller. “You don’t know what your child is capable of until you try. Keep pushing forward!”