Friedreich's Ataxia Parents Group
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U.S. Team Makes Wish Come True at SkiTAM
PARK CITY, Utah (May 30) - Each April, the U.S. Disabled Ski Team joins
with CTAM of the Rocky Mountains for SkiTAM, a fundraising event that brings
together the biggest names in the cable and telecommunications industry to
provide over half the annual operating budget for the U.S. Disabled program. The
event is always a success and 2007 was a record breaker, but it may have been
the experience of Aaron Kittel that put this year over-the-top.
Alicia said it would be great if Aaron could get to SkiTAM someday so he could meet the athletes. One thing led to another, soon it's a year later and Aaron has made the 2-hour journey from Loveland, Colorado to Vail for SkiTAM; his room, travel and skiing paid for by Alicia's father, a physician in Florida, and his registration and admission to SkiTAM the industry-only events picked up by Mika's company, INT2. "Through our conversations, she learned that I never did a Make-A-Wish, and that is not really available for older "young" boys like me," said Kittel. "She also knew that I have gone skiing and really enjoyed it, but haven't been back for a while. She talked to Alicia about this and Alicia mentioned that she has a friend named Mika who would like to sponsor Alicia and her dad and me and my brother - to be honest; it sort of just fell into my lap. The stars just must have aligned for me." But Kittel's trip to SkiTAM turned out to be something more that what it first appeared to be on the surface. Aaron's disability was not due to an injury, or an obvious pre-natal birth defect. He was born with a rare and crippling disease called Friedrich's Ataxia, which is a slow degeneration of the body's nerve cells. It does not always manifest itself early in life, and in Aaron's case he didn't realize he had it until he was in junior high school. At that point his parents got tested and found out that both of them were genetic carriers of the disease. They also discovered that the odds against meeting and actually giving birth to a child with the disease were astronomical. Yet that's exactly what happened. Unfortunately, by the time the Kittels realized they were carriers, the couple had already had two more children. Michael, who is now 22, is disease free. But 15-year old Allie, the baby of the family, has discovered she does indeed have FA, the fatal disease that has left her oldest brother in a wheelchair and, as of recently, unable to care for himself. When Aaron got to SkiTAM he was escorted by Michael, who has become not just Aaron's little bother, but his roommate, caretaker and best friend. The two got to meet the members of the U.S. Disabled Ski Team, interact with executives from the cable industry and, of course, ski together. At first no one knew who Aaron was. He simply moved among the crowd with Michael by his side. As Aaron's disease has advanced it has made both seeing and hearing difficult for him, so in many cases Michael served as an intermediary for his older brother. Eventually, however, word started to spread about Aaron and his special journey to Vail. Soon the athletes began seeking out Aaron, eager to meet him. Most asked to have pictures taken with him. It was a remarkable turn of events as the young man who went to Vail to meet some of his heroes became, in turn, their hero. "I thought it was really neat that he wanted to meet us and be a part of it," said eight-year Team veteran Joe Tompkins. "It was a new experience for most of us too and it's awesome to see that what we do really does have an impact on other peoples lives. For me, that was huge." Later Aaron's father talked about his son's disability and how much it meant to him to be able to go to Vail. He explained that he had fought his share of demons in his life, but had since found peace in both his faith and his son's courage and wisdom. "Aaron has come to accept his disease and he's realized that it is not who he is, it is just something he has. He's learned, and he's taught us, that he simply lives within his body. He will never let himself be defined by what is happening to it." Michael, who has startling maturity for anyone, much less a 22-year old, said of SkiTAM, "It was a nice event, it really was. But as much as I enjoyed meeting the athletes and all the people there, what I liked best about it was I got a chance to ski with my brother again." For Aaron, the highlights were numerous. "There were a lot of big moments," he said. " On Sunday I was skiing down a slope that was freshly groomed, so the snow was nice and soft. It was a sunny day, with very few other people on that run, it just felt perfect. I enjoyed meeting all of the athletes. They all had exceptional personalities and they continue to be an inspiration to me. From this, I've gained a bigger picture of life - anything is possible and there are no limits." Aaron's father says a cure for the disease may not come in time to help his son, but that he continues to fight and help spread awareness of it. He explained that Ronald Bartek, one of the chief negotiators for Ronald Regan during Soviet nuclear arms talks, left public service when it was discovered his child had FA, and that he has been working feverishly to raise funds for the National Institute of Health, at which major research on the disease continues. When asked the life expectancy of someone with Friedrich's Ataxia, he explained it was between 30 and 35. He was then asked how old Aaron was. He let out a small breath and said simply, "30."
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