Jessica, 27, was born with a rare genetic condition known as COACH, which stands for cerebellar vermis aplasia, oligophrenia, congenital ataxia, coloboma and hepatic fibrosis. Only a few thousand people in the country are believed to have this syndrome in which part of the brain does not fully form. Most individuals with COACH have a cognitive disability, organ problems and difficulty with movement.
For Jessica, life has revolved around medications, treatments and surgeries. She had a kidney transplant when she was 13 and currently is struggling with “major” liver problems, say her parents, Joy and John Dillon of Flagstaff. She had another “really big liver surgery” last month but will eventually need a liver transplant, too.
“Our daughter has a lot of special features,” said John. “She has some motor skills challenges. It’s difficult for her to use her feet and hands. She can’t open a bottle of water. And she has no equilibrium, which makes walking pretty dangerous. She has very poor eyesight and can fall frequently. As she puts it, she trips on air. She’s extremely fragile, and during this pandemic we’ve kept her mostly sequestered from the rest of the world for her own health and safety. That’s been extra hard for her.”
Despite her difficulties, “she tries so hard to be happy,” said her mom, “even though she doesn’t always feel good.”
Now, Jessica has a new reason to smile – outdoor fun on the slopes of the San Francisco Peaks. “I love skiing!” she said. “Last year was my first time and I just loved it and now I can ski with my family!”
And that’s a big deal. “The last few years she’d see the excitement as we’d plan and go skiing with grandpa, uncles, aunts and cousins,” said John. “But Jessica would have to stay home with grandma.”
Joy and John first heard about the Adaptive Program while riding a chairlift at Arizona Snowbowl. Joy went to the Snowbowl website and enrolled Jessica last March, not knowing how the lesson would go.
“It was excitement and fear at the same time – a real mixture,” said Joy. “When it happened, it was heavenly.”
Adaptive Program Ski Instructor Truman Shoaff met the family at Hart Prairie Lodge. Jessica was fitted with a helmet and ski poles, which are like braces for the arms with small skis on the ends that act as stabilizing paddles. Wearing her own snow boots, Jessica was positioned into the ski chair that sits atop a wide single ski. A safety harness with straps connected Truman to the chair, as he skied behind.
“He was awesome,” Jessica said about Truman. Her dad agreed. “He was so amazing, so professional, so kind,” said John. “He happens to be the same age as Jessica and they hit it off from the start. He was trained in adaptive skiing and was clearly very well versed in how to handle people with disabilities. He made her feel safe the entire time, which is hard to do for any first-time skier anyway.”
Jessica tried to use the ski poles but didn’t have the strength or balance. Instead, she learned to steer by tilting her head in the direction that she wanted to go. “We chased her down the mountain for two hours and she couldn’t stop giggling and laughing,” said John. “Now, she can’t wait to go back.”
John Dillon was born into a big skiing family. His parents owned a ski shop, the Village Sports Den in Flagstaff, and his cousin, Norm Johnson, owned the Snowbowl in the 1970s and ‘80s. John has been swooshing down the slopes since he was 2.
“Skiing is an important part of my life and Snowbowl is a very special place. Some of my fondest memories are on this wonderful mountain,” said John. “When I was a kid, during the winter we would pray as a family every morning and night for snow. I thought all families did that. And now, snowmaking has changed everything compared to those days of total uncertainty! Not everyone understands or appreciates just how incredible these massive investments into Snowbowl and our community really are.”
Snowbowl became a special place for John and Joy as a couple, too. The two met in junior high, knew each other through high school and college, and reconnected later in life. John recalls how Jessica informed him that she and her mom were “a package deal” before the couple married four years ago. Between them, the couple has five children.
In addition to their day jobs and in honor of Jessica, John and Joy started a company called Package Deal Adventures. They recently partnered with their friends in acquiring the Timberline Short Nine golf course in Continental Country Club. Also, they are planning to bring an indoor trampoline park and family entertainment center to Flagstaff next year.
“Jessica will play a huge role as the company’s Ambassador of Happiness. She will welcome kids and provide birthday baskets and smiles,” said John. “We want to provide all families with clean, fun activities and especially opportunities for those kids with special features that just aren’t living lives most people consider normal – like what Snowbowl’s Adaptive Program has provided for Jessica.”
Snowbowl began the Adaptive Program five years ago. “At Arizona Snowbowl, we strongly believe that there are no limits in learning to ski or snowboard,” states the mountain resort’s website. “The Ski and Snowboard School offers a specialized adaptive skiing/snowboarding program that helps you build your confidence, improve your fitness level, make new friends, and find a new passion for winter sports. Professionally trained instructors work with a range of disabilities.”
Snowbowl started Jessica on the Magic Carpet and then progressed to other chairlifts. Later, General Manager Rob Linde loaded her into a cabin on the new Arizona Gondola to have a look from the top. “It blew her mind!” said John. “It was one of the coolest days ever. I never imagined she’d have that opportunity.”
“The lift expanded our operation to an entirely new level and broadened our reach to serve a much more diverse audience than ever before,” said Linde. “Being able to easily enter a comfortable warm gondola cabin and be whisked to the top of Arizona is a new experience for everyone. Visitors young and old of all abilities are able to enjoy this special place at 11,500 feet, which offers some of the most spectacular views on the planet.”
“We are just so grateful to Snowbowl management and James Coleman [Snowbowl owner] for making the Adaptive Program and the gondola available,” said John. “It is an enormous investment not just in capital infrastructure but also directly in people’s lives.”
Helping to fund the Adaptive Program is Nackard Pepsi, which is partnering with Snowbowl in a recycling program. Money made from recycling cans and cups and other items will go to the program.
“All of the products that Nackard Pepsi sells to Snowbowl are recyclable, but it’s often a challenge ensuring those items make it into the correct recycling stream,” said Nackard Pepsi CEO Palmer Nackard. “We’ve developed an effective system to capture recyclable items from the slopes, transport the items to our facility for sorting, and deliver the items to the appropriate facilities to be recycled. We collect a small payment when delivering the recyclable material to the recycling facility and, as an added bonus, we are contributing that money to Snowbowl’s Adaptive Ski Program. This new partnership with Snowbowl is a perfect example of a circular economy for recycled materials that will benefit numerous groups in an impactful way. Look for the new recycling bins on the mountain this winter and – most importantly – be sure to use them!”
“The Adaptive Program is life-changing,” said Joy. “For the mountain to have that kind of program and those adaptations is just awesome. We’ll never forget what we experienced that day!” QCBN
By Bonnie Stevens, QCBN