By Leigh Hornbeck
For someone who doesn’t ski, the sport looks ridiculous. First there’s a skier’s willingness to wear clunky, inflexible boots. Then there’s the cold ride on a chair dangling from a cable dozens of feet over frozen ground. And when you get off? You lose even more mobility by anchoring your feet to two slippery boards and letting gravity take over.
But if you love to ski, those are all little deals you’ll make without a thought. Because being in love with skiing is the cold, clean smell of winter air. It’s the sound of skis sliding over snow and the click of boots in bindings. It’s the feeling of flying, held to the earth by the push and pull between muscle and gravity as you carve a turn across the fall line.
There’s an adaptive winter sports program at Double H Ranch, near Lake Luzerne, designed to bring the joy of skiing and snowboarding—free of charge—to children with physical limitations or illnesses that might otherwise keep them away from the sport. Now in its 21st year, the program is staffed by volunteers who see each child’s needs as a challenge to solve, not a barrier. Children with low mobility and core strength use a bi-ski, a seat attached to two skis. An able-bodied volunteer skis behind holding tethers, so the skier in the bi-ski never loses control. Other tools include a mono-ski; outriggers for students who ski on their own but need extra stability; and a device called an “edgie-wedgie” that keeps a skier’s tips together. While much of the equipment is highly customized, other tools the volunteers use at Double H are simple—plastic lawn chairs, for example, with skis screwed onto the legs. A skier who has low muscle tone sits in the lift line, instead of standing—saving her strength for skiing.
It’s part of what makes skiing possible for Lexi Felt, 14. She was born with spina bifida, a birth defect that affects the spine and spinal cord. The lower the defect, the less restriction on a person’s movement, explained Lexi’s mom, Peggy, while she watched her daughter ski on a sunny day last winter. Lexi uses outriggers and wears braces on her legs. She’s been skiing for five years.
“Her sisters ski, but she was hesitant. She tried to do it on her own, then we brought her here,” Peggy Felt said. “The instructors are very patient and knowledgeable. Her instructor took her to Gore.”
The Adaptive Winter Sports Program is one of many programs the Double H Ranch offers children with chronic illnesses or disabilities. In the summer, approximately 900 children attend camp, where they swim, use a zip line, do crafts and experience camp with medical assistance that allows them to have fun the way healthy, typically developing kids do. The name Double H stands for health and happiness. The nonprofit was created in 1993 by Charles R. Wood, the founder of Storytown USA in Queensbury (now the Great Escape, a Six Flags amusement park). Wood was inspired by the Hole in the Wall Gang Camp in Connecticut, founded by actor Paul Newman in 1988. Newman helped Wood get his camp running. The nonprofit raises nearly $4 million each year to support its programs. More than half of the money comes from individual donations.
The winter sports program was added in 1998. Children ages 6 to 16 participate and have use of two trails, a double chair lift and a conveyor lift. About 200 skiers and snowboarders participate each year, and Double H recruits more than 200 volunteer instructors and members of the National Ski Patrol to make a 1-to-1 ratio possible. Underneath their ski clothes, the children might have ports for chemotherapy, orthotics, visual impairments or a diagnosis on the autism spectrum. But to a casual observer, the kids are just skiers and snowboarders carving turns, falling, laughing, getting up again.
Brooklynne Beebe started snowboarding when she was 6. Now 16, she is one of the more experienced riders on the hill. She has juvenile rheumatoid arthritis, a painful, aggressive disease that can destroy joints. Brooklynne’s mother, Jeslyn Bell, has it too. Brooklynne’s was diagnosed early and she undergoes treatments that keep the disease in check, Bell explained. Other sports were never an option for Brooklynne because of the injury risk, but the program at Double H made snowboarding possible.
“The first thing they taught me was how to fall safely, without getting hurt,” Brooklynne said after a run.
Bell is a volunteer at Double H. She was so thankful for her daughter’s experience, she was eager to do whatever she could to help.
“If you look around (the lodge) you see parents all in a state of relaxation,” Bell said. “It’s the relief of knowing their child is safe, accepted and included.”
Elsewhere on the snow, James Deere watched his son James skiing in a mono ski with an instructor holding onto the back of the bucket chair. James, 11, contracted Strep A when he was 3 ½. He became septic and doctors had to amputate one of his arms and legs. His heart stopped, and he suffered brain damage. His speech is limited. His dad is his full-time caretaker. For three years, James Deere has been bringing his son to Double H to ski a few times each winter.
“When he wakes up, he knows,” Deere said.
On the hill, young James laughed and grinned as he flew toward his father. The smile on his face said everything he didn’t have the words to say. ■