Though Stephanie Jallen was just one month shy of her 10th birthday and the youngest child in the room, it was clear from the way her big brown eyes lit up when she saw the other kids that she would be making a lot of friends that week.

The kids had all come to Camelback Mountain in the Poconos to participate in a ski camp that was started by the New York-based ASPIRE program for youths with limb differences. Every winter, ASPIRE partners with the Amputee Coalition of America’s Youth Activities Program and the Pennsylvania Center for Adapted Sports to offer ski instruction, support and motivation. As a result, they begin an athletic journey that could one day give them the opportunity to participate in the Paralympics.

Living and Loving Life

Stephanie waits to get fitted for ski boots

Once Stephanie met the other children and was fitted by instructors into adaptive ski gear, her enthusiasm and confidence made her seem more like an experienced skier — not like a first-timer at all. These traits apparently permeate all of Stephanie’s activities, serving her well as someone with more physical challenges than even many other children with limb differences.

At the time of Stephanie’s birth, her mother, Deb, was told by Hershey Medical Center that Stephanie was one of just 32 children in the world with CHILD syndrome (congenital hemidysplasia with ichthyosiform erythroderma and limb defects), a congenital disorder that caused the entire left half of Stephanie’s body to have limb defects and a dangerous, stubborn rash.

Stephanie’s left leg was amputated above the knee when she was still an infant, but her left arm remains as it always has been: shorter than her right and bearing one finger. Still, even with such a hardship, Stephanie is anything but disabled. In the rural Pennsylvania town where she lives, she readily enjoys climbing trees, rollerblading, swimming and jumping on her trampoline. Her enthusiasm and love of life make her popular with friends at school and an inspiration to her teachers.

Stephanie keeps her cool on race day

Becoming a “Two-Tracker”

Even when Deb wondered aloud on the way to the ski resort how her daughter would ski, Stephanie said she had it all figured out. She knew she would use one right ski and one outrigger held in her right hand, which is exactly how her instructors outfitted her.

On the first day of the camp, instructors trained in adaptive skiing met individually with the youths to help them fit comfortably into their ski boots. Some children skied with prostheses, some with outriggers, and others with both. There was even a mono-ski available, which allows people to ski while sitting and using their body weight to make turns.

As a two-tracker, someone who makes two ski tracks in the snow, Stephanie will eventually compete with other two-trackers, regardless of whether they ski with an outrigger or with two regular skis.

A Paralympic Journey

As it is for many children, Stephanie’s first week is full of experimentation, confidence-building, and learning how to smile and laugh while taking a few spills in the snow. Still, every attendee is expected to take the opportunity seriously and to work hard, skiing from 9 a.m. until mid-afternoon every day.

Rachel, Stephanie and Alexandra show off their medals on awards night

At the end of the week, races are held in each skill level. From the time children are 13, if they meet a specified time for the race in their level, they move up a level until they eventually compete statewide, regionally and nationally. The final step is the Paralympics.

While the Jallen family is thrilled that ASPIRE provides another open door for Stephanie to accomplish her dreams, Deb emphasizes that Stephanie was there to have fun, not to prove anything.

What are the goals of this energetic young girl? “I would like to be a veterinarian — and a famous one-legged skier,” she announces before the end of her first week on the slopes. Even though fame itself is not the goal of this weeklong ski retreat, each child has roughly equal opportunity to make it big, says Isabel Bohn, executive director of the Pennsylvania Center for Adapted Sports.

“A very small percentage of the kids coming through the program will actually make it to the Paralympics,” she explains, “but if a child has the desire, drive and can keep his or her grades up, then they have a real opportunity to compete with the best of the best challenged athletes.”

 Nonetheless, children and their parents need only to look at Ralph Green, 2006 Paralympian and ASPIRE graduate, to see how, when given the right opportunity at the right time, it is possible to overcome extreme adversity. Green, who lost his left leg after his hip was shattered by a bullet at the age of 15, is now the first African-American to make the U.S. Disabled Alpine Team.

Looking Forward to the Day

When not skiing, Stephanie, who doesn’t wear a prosthetic arm, also prefers to hop rather than wear her prosthetic leg, demonstrating her natural agility and balance. While she does wear the leg at times, she alternates between it and an electric scooter when hopping is neither safe nor convenient. Unfortunately, the rash caused by her syndrome makes her prosthesis uncomfortable.

“The leg holds me back because I can’t go as fast with it on,” she says.

At school, Stephanie participates in gym without her prosthesis and even played on the basketball team until recently giving it up because she wasn’t as fast as the other kids. She looks forward to the day when she will be able to fit into a running leg so she can achieve more speed.

Despite her physical challenges and even occasional disappointments, Stephanie seems to waive off discouragement, never letting it get in the way of her ambitions. Her mother says that she never hears Stephanie say, “I can’t.” At first, Stephanie echoes this, then reconsiders.

“Well,” she says, “actually, I can’t do a cartwheel yet, but I’ve almost got it.”

“It’s Just Plain Joyful”

In addition to the athletic goals of the ski camp, this week of ambitious skiing has and will continue to produce many other positive changes in the lives of these youngsters.

Before coming to the camp, Stephanie had been asking to meet other children like her. Even though she has many friends and a supportive family, this was the first time she has met a group of kids with similar physical challenges.

Fortunately, the many adults coordinating the camp also recognize that it’s not all about sports; it’s also about making kids happy and parents proud.

“It’s just plain joyful,” Bohn says.

Asked if she will return next year, Stephanie emphatically declares,

“Oh, yes! If my mom won’t let me, I’ll drive myself.”

It’s obvious that nothing is going to stand in the way of this little girl and her huge dreams — and that, her instructors say, is exactly the kind of attitude that can make a champion.                                

ACA and instructors with Pennsylvania Center for Adapted Sports together with ASPIRE skiers