Breaking Barriers on the Slopes A family’s path to joy and healing through adaptive skiing By Leonie Sherman
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.
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wenty-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.
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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 theaterat 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