A family’s path to joy and healing through adaptive skiing
If the best skier is the one having the most fun, Noah Habib wins every time. He can’t walk, talk or feed himself, but he can express joy. And when he’s bombing down a bunny slope in a sit ski yelling with pure exhilaration, everyone can tell he’s having the time of his life. Not everyone can tell that adaptive skiing knit his family back together after a decade of struggle.
Twenty-eight years ago Noah was born four weeks early. “That wouldn’t have been a problem except he wasn’t breathing,” explains his mother Heidi Cartan. During the course of intubation, Noah suffered a fracture of his C2, or cervical vertebrae.
In a fully grown human that fracture would have severed the spinal cord, making respiration impossible. But because babies have more cartilage than bone, Noah’s fractured spine wasn’t even identified for three months. 
Noah spent his first month in the Neonatal Intensive Care Unit and came home on his due date. But he wasn’t thriving. “He couldn’t eat, wasn’t putting on weight and he cried all the time,” says Cartan. “It seemed like he couldn’t even swallow. In the course of tests they found the fracture.”
So at three and a half months and nine and a half pounds, Noah had a successful spinal fusion. According to his neurosurgeon, he was the smallest child in the US to successfully undergo that operation.“They took bone from his left leg and grafted it to the back of his neck, fusing his C1 through C3 vertebrae and saving his life,” explains Cartan.
The operation saved his life, but the injury left him a quadriplegic. “Noah has some movement in his left arm and hand, and very limited use of his right arm and hand,” explains Cartan. “But he has no ability to control his muscles for standing or walking. He’s never been ambulatory. He can’t bear his own weight and he’s never sat up by himself.”
Cartan and her husband Philippe were avid backpackers and Sierra lovers but abandoned many of their favorite activities as they adapted to Noah’s special needs, providing constant care. At eight years old he was diagnosed with a genetic syndrome called Kabuki.
With long eyelashes, low ears, broad noses, and a very specific set to the eyes, folks with this genetic syndrome resemble the actors in Kabuki theater- at least the Japanese physician who first identified it thought so. People who have Kabuki are non-verbal but tend to be very good natured, “almost abnormally happy,” according to Cartan. It’s frequently misdiagnosed as cerebral palsy (CP), but though the two conditions share some characteristics they are distinct.
For years, the young family’s sole focus revolved around Noah’s needs and their own survival. But at work, Philippe’s colleague, Timothy Miller, a fellow engineer and adaptive athlete with CP, began to advocate for adaptive skiing. He was going to Bear Valley every weekend and raving about this time on the slopes.
Even an hour long car ride with Noah was rough, so two years passed before they were able to drive to the mountains.
After the drive, the next hurdle was finding a place to rent. Their first choice was only accessible by snowmobile and the one they settled for required Philippe to carry Noah up a flight of stairs to use the bathroom.
Before hitting the slopes, they had to bundle Noah up in multiple layers with heating pads in mittens and shoes — being non-ambulatory leads to very poor circulation. And they had to lay down over $300 for a 90 minute lesson.
The ski instructor met them outside the lodge with a sit ski, which consists of two skis welded together, a molded seat on top and a handle like a stroller.
The instructor holds the handle and skis down with complete control over the occupant’s descent. But first they have to get up the hill. The molded seat has a small hydraulic pump; at the lift, they pump the lever and it separates the ski from seat; the chairlift goes into that space, they strap the adaptive skier in and whisk them to the top.
“The first time I saw it I was so amazed I couldn’t even take a photo,” admits Cartan.
“Noah wasn’t going to ski, he can’t hold onto anything, he was just going for a ride,” explains Cartan. “But he was going for the same ride on the same slope as everyone else.”
The only difference was that Noah was hollering at the top of his lungs all the way down the slope. “He was just yelling ‘Yay’ and ‘Aaah’, I couldn’t see him but I could hear him,” recalls Cartan. “Everyone on the chairlift could hear him! They all started cheering, total strangers, he was clearly just ecstatic. It was the happiest I’d ever seen him. All he wanted to do was go again. He kept using sign language to tell the instructor ‘more’ and ‘faster’!”
Cartan pauses to wipe away tears before continuing. “Watching Noah ski was our best parenting moment with him in ten years of a lot of struggle and hard times.”
“I think being out on the slopes, doing something Philippe and I had done together and being able to include our child normalized our family,” Cartan continues. “It allowed us to feel like a family instead of a struggling family. Everything we’d done up to that point, even swimming, had been therapeutic, but this was just pure fun. We got to play, we got to enjoy outdoor recreation together, really for the first time.”
They’ve taken him every winter since then. Sometimes they all ski together. It’s the highlight of Noah’s year. Cartan and Philippe took second jobs so they could buy a piece of land, build an accessible cabin and go to the mountains whenever they want.
“Our back country experience stopped really abruptly when we had Noah. Adaptive skiing got us back into our beloved Sierra,” reflects Cartan. “Being on top of Bear Valley mountain, back in the Sierra, all of us having fun together, it’s hard to describe how profound that was. Honestly, parenting someone with such significant health problems, we hadn’t experienced that joy together. Adaptive skiing opened up fun and recreation in a way we expected to enjoy with our children but hadn’t experienced yet. It transformed our family.”
Adaptive sports transform the lives of everyone involved
After participating in a range of adaptive sports, Timothy Miller, who inspired Noah’s dad to take him skiing, quit his engineering job, went to grad school and became a Certified Therapeutic Recreational Therapist. His story is just one example of how adaptive sports can change lives, as seen in the work of others who have dedicated themselves to helping individuals with disabilities thrive. Below is a partial list of organizations and individuals making a significant impact in the world of adaptive sports.”
> Shared Adventures
Foster Andersen also transformed his disability into a career. After an accident severed his spinal cord between C5 and C6, Andersen started Shared Adventures, which allows thousands of disabled folks to enjoy outdoor activities every year. Shared Adventures sponsors a five day adventure camp, horseback riding, swimming, whale watching, art classes and more.
For 30 years, they’ve been celebrating the anniversary of Andersen’s motorcycle accident by hosting Day on the Beach, where hundreds of disabled folks get to try SCUBA diving, outrigger canoeing, surfing, or just lounge on the beach with friends listening to live music. sharedadventures.org
> Central California Adaptive Sports Center
Decades of service brought Randy Coffman to adaptive skiing. After retiring from 32 years as a National Park Ranger, Coffman volunteered at an adaptive ski program in Colorado and decided to start something similar back home in Shaver Lake, California. Eleven years later Central California Adaptive Sports Center offers outdoor programs to hundreds of persons with disabilities each year, and they have never turned anyone away due to lack of funds. “Honestly, we aren’t sure who benefits most, the participants or the instructors,” says Coffman. “It has a deep effect on us to see participants challenge themselves while enjoying the outdoors.” centralcaladaptive.org
> Achieve Tahoe
Some adaptive sports non-profits focus on the challenge. Achieve Tahoe believes encouraging disabled folks to go beyond their perceived limits brings tremendous growth. They focus on high risk sports like rock climbing or alpine skiing.
“If someone walks through our door there’s a 90% chance they will stand up and ski. If they roll through the door they’ll use equipment we have that will help them achieve their potential based on their disability,” explains Program Director Michael Hunter. “We believe that as people gain independence they gain confidence and that benefits their overall health.” achievetahoe.org
> High Fives
High Fives Foundation focuses on helping athletes who have sustained life-altering injuries get back to doing what they love. By providing support and adaptive sports opportunities, they help individuals regain their confidence and enjoy the thrill of outdoor activities once again.
Founded by Roy Tuscany, who himself experienced a life-changing injury, the organization embodies his belief that “Injuries don’t stop and we don’t ever want to stop someone’s recovery, so by providing them financial assistance we’re able to have them set goals and get to where they want to be.” highfivesfoundation.org
Adaptive sports programs are united by love, service and a commitment to making the transformative power of nature and outdoor recreation more accessible. They also all need your help. Please consider volunteering or donating. Your generosity will change lives, including your own.
