Athlete Spotlight - Stephanie Jallen

Stephanie Jallen was born with a rare birth defect called CHILD Syndrome (congenital hemi-dysplasia with ichthyosiform erythroderma and limb defects). Hemi-dysplasia means it only aff ects half of her body with Ichthyosis which is a severe skin disorder. Her left side never fully developed, leaving her arm very short and tapered down to one digit. Her leg also had to be amputated when she was an infant.

Despite her diffi cult challenges, Stephanie stays very active. She plays on an undefeated soccer team (using her one leg and a cane), rides a special trike and, when the skin disorder rash doesn’t prevent her from wearing her prosthetic leg, she plays on a basketball team, roller blades and enjoys many other activities.

Her passion for all sports led her to a youth ski camp four years ago at the local ski area, Camelback, Pennsylvania. Stephanie was such a cute and vivacious young lady that everyone at Camelback was drawn to her. Although, many ski instructors wanted to put her in a bi-ski to take her up the mountain the ‘easy’ way,’ she refused to be handled by the instructor restraining her and controlling the bucket. Stephanie wanted to ski on her own. Mau Thompson, now the ASK program coordinator for Adaptive Adventrues, commented, “I have another athlete who skis on one leg with the support of one arm holding an outrigger but that’s not really an easy way to learn how to ski, especially for a 9 year-old kid.” Stephanie decided to give it a try. Something about Stephanie made Mau think that she could do it. Mau was ready for the challenge and knew Stephanie would love skiing independently.

During the next four days, Stephanie fell a lot! With only one side of her upper body providing support, it was difficult for her to balance upright. Stand up, slide and fall, stand up again, slide and fall. Stephanie repeated that on the bunny hill all day long. When she came back to the lodge for the lunch break, she ate tons of food and fell asleep on a chair. “Stephanie skied literally until she dropped” her new coach Mau recalled.

Stephanie never complained. She did not complain about how tired her leg was, how tough it was to ski with one leg or how frustrating it was to fall down all the time. Stephanie enjoyed the experience she had at that camp and it showed in her smile. Mau noted, “Stephanie could not get off of the bunny hill during her fi rst ski camp, but I realized that she loves speed and has a strong competitive mind. On the last day of the camp, we had a race on the intermediate hill so I decided to take her with me to show her what a ski race looks like. I skied through the racecourse with Stephanie on my back!”

Now Stephanie at 12 years old has committed herself to becoming a Paralympic ski racer and to represent the USA on the US Disabled Ski Team. Stephanie is one of the regular participants at the STARS of Tomorrow youth sports camps throughout the year. To learn more about Stephanie visit her website at www.stephaniejallen.org.