There was one thing that was brighter than 8-year-old Jana Staudenraus’ coral ski jacket and orange helmet as she flew down the mountain at Stevens Pass this weekend on a sit ski: her big smile. As she came to a stop at the bottom of the slope, her family was there cheering, celebrating the first time Jana had ever skied. The exuberant little girl couldn’t wait to do another run. “I want to go again,” she exclaimed. “I want to go fast.”
Another lap down, with her ski instructor tethered behind her, Jana was beaming with joy.
“Did you see me?” Jana asked her mom.
“Yes. You are doing such a great job,” her mother replied.
“I fell once,” Jana said frowning slightly.
“Yes,” her mother said sympathetically. “But just like in life, what do we do when we fall?” she asked warmly.
“You get back up,” Jana replied with a smile, without missing a beat.
Jana was born with Spina Bifida. She’s been a patient at Seattle Children’s literally since the day she was born, being transferred to the hospital just hours after Amy Staudenraus, her mother, gave birth. Since then, the hospital has become like a second home.
Staunderaus found out at her 20-week ultrasound that her daughter would be born with Spina Bifida. She said it was shocking, but they embraced it as just part of who she is.
“It didn’t change anything. It is what it is,” said Staudenraus. “We decided we were going to make lemonade,” her father added.
Today, they couldn’t be more proud of their fearless daughter.
“Jana doesn’t get the chance to go fast often,” said Staunderaus. “She’s often restricted by her leg braces. This has been a wonderful experience for her. We want her to have these experiences. For her to be able to try whatever she wants to try and see what sticks.”
Trying something new
Every year, Outdoors for All and Seattle Children’s partner to give patients at the hospital the opportunity to ski or snowboard free of charge. Travel, adaptive ski equipment and lunch is all provided.
Kristen Connolly, a physical therapist at Seattle Children’s and volunteer with Outdoors for All, helped organize the event this year. She said she hopes everyone who participates leaves feeling empowered and can expand the definition of function.
“These kids have faced different challenges throughout their lives,” said Connolly. “But they don’t have disabilities. They have abilities. They can do anything. When you see them at the bottom of the ski lift with big smiles on their faces, it’s rewarding because you know they truly feel that too. This is the ‘why’ behind what we do in the clinic – to find real-life application in a fun, community-based activity!”
Life after cancer
A year ago today, 19-year-old Brian Park was diagnosed with osteosarcoma, a rare and aggressive form of bone cancer. The diagnosis was devastating and turned his world upside down.
He was in the middle of his junior year of high school. His new normal became traveling to and from Seattle Children’s. He went through more than nine months of chemotherapy, and in June 2018, he had his left leg amputated.
“I spent more time in the hospital than I did at home,” said Brian.
Since his amputation, Brian said it’s been a difficult adjustment, but each day he reminds himself to be positive and keep looking forward.
This weekend, he did just that. He snowboarded for the first time in his life, only nine months after his amputation. Within hours, he was gliding down the slope.
“It’s been a really satisfying experience,” said Brian.
For those still in treatment at Seattle Children’s, Brian said he hopes his story can be inspiring.
“You’re going through the hardest time in your life,” said Brian. “It’s horrible right now, but there is still so much out there to live for.
It’s important to always be thankful. Say thank you a thousand times. There will always be someone going through worse. Stay positive and keep looking ahead. There is life after cancer.”
Ian Dowey, a volunteer with Outdoors for All and a nurse practitioner at Seattle Children’s, said this is the first time he’s seen Brian since he was in the hospital.
“It gives you goosebumps,” he said. “The last time I saw him, he had recently finished chemotherapy and just had major surgery. He had lost his hair and was understandably exhausted. Whereas today, he looks really strong! To see our patients doing so well, it makes you think about the bigger picture and shows what we do matters. We’re seeing them outside the hospital after one of the most challenging times of their lives. Now, they are just being kids. It’s awesome.”
Brian has a bright future ahead of him. He said he’s looking forward to starting school in the fall. He’ll be attending the University of Washington.
Words of support
Dr. Antoinette Lindberg, an orthopedic surgeon at Seattle Children’s, attended the event to support two of her patients who were skiing and snowboarding for the first time. She was beaming at the sight of them outside the walls of the hospital laughing, smiling and enjoying life.
“It reminds me why I do what I do,” said Lindberg. “For all the hard times I share with my patients and their families, there is something at the end of their treatment to look forward to. Often families will show us pictures and videos after they leave the hospital, but to actually be able to see it in person is a whole other experience. I think I’m more excited than they are,” she said laughing.
Markus Jacobs, 14, was one of the patients Lindberg had encouraged to attend the event. His family recently moved to the Seattle area, and Seattle Children’s has become their new medical home. Markus was diagnosed with osteosarcoma in April 2017 after experiencing pain in his leg. Three months later, he underwent a roationplasty. Doctors amputated the leg above the knee and then reattached the foot backwards.
Markus was a natural on the ski slope. After a couple hours practicing turns on the small hill, he enthusiastically asked his instructor if they could go to the chair lift.
For Angel Hoyle, Markus’ mother, the day was filled with mixed emotions.
“For me, it’s scary, but also exciting,” said Hoyle. “I don’t want to say no and put limits on him. I want him to find out what he’s capable of. We’ll let him dictate what he can and can’t do. I want to see him do things that make him happy, whatever that means for him.”
The smile on his face as he skied down the mountain brought Hoyle joy.
“Not so long ago, we didn’t know if he had a future,” said Hoyle.
Today, they were reminded he does, and that future probably includes more time in the mountains.
“He wants to keep going,” she said. “He wants to keep skiing.”
All the kids and families who attended agreed it was an incredible experience they won’t soon forget.
“We’re so incredibly grateful for all the volunteers,” said Staunderaus. “Today was so special.”
Outdoors for All offers year-round recreational activities for children and adults of all abilities. Their mission is, “To enrich the quality of life for children and adults with disabilities through outdoor recreation.” Programming for skiing/snowboarding, rock climbing, kayaking, cycling, and more are available at various locations throughout the year. For more information about these enriching adaptive recreation programs, visit Outdoors for All, or contact Outdoors for All here.