Hiking for hope | AspenTimes.com
Roger Marolt

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Hiking for hope

Hope is the difference between a dream and reality.I learned a lot about hope last year after I wrote a column on an Aspen family that recently learned that their son has muscular dystrophy. Ian Sharp was 11 years old at the time. My kids go to school with him. His gym teacher informed his parents that Ian seemed to be getting an unusual amount of cramping in his calves and feet. Shortly afterward, a seemingly innocuous adolescent problem was diagnosed as an incurable disease that would likely put their child in a wheelchair by the time he was 20.In that column, I wrote about another Aspen family that lost a child to the same disease when I was only a child myself. I recalled the bewilderment and fear I felt as I watched the disease take away little John Keleher long before he had a chance to grow up. Frustration consumed me as I researched the disease and found that nearly three decades later, treatment is still limited to making those afflicted comfortable. How, I wondered, can any of us be comfortable while a disease that targets mostly children remains incurable? I struggled my way through that column and did my best to make people see the importance of participating in the Hike for Hope to raise money for muscular dystrophy research, to show support for Ian and his family, to show support for my old neighbors, the Kelehers. I was filled with sorrow and sympathy for everyone who has ever suffered from the effects of MD. Then a funny thing happened when I showed up at Buttermilk early one Sunday morning last January. To my surprise, I didn’t see sad and frustrated people at the starting line. I found happy people. They were together for a cause, not taking for granted the moment, sharing a piece of life together. They were a group full of hope.As I neared the top of Buttermilk, I came upon two members of the Keleher family; men who had lost a son and brother to the disease so many years ago. They looked to me like the most cheerful people on the mountain. We talked about little things as we hiked together, under the illusion that we were on the same level as the rising sun. Near the finish line the father put his arm around me and his son and said quietly, “Come on, we’ll finish this thing together.” Filled with his energy, the three of us ran the remaining few yards in solidarity. It was then that I learned in a short course what many, much wiser, have learned through grief and sorrow: Frustration doesn’t fuel hope. Faith and action do. Perhaps more importantly, hope helps us make peace with ourselves in a world oftentimes disinclined to giving us answers. Since then, I have seen that same type of hope come to life in the Sharp family. Early on, after helping to raise $30,000 in a local Muscular Dystrophy Association fundraiser, they wondered if they could make a more direct impact in fighting the disease. At the Children’s Hospital Muscle Clinic, part of the Department of Pediatric Rehabilitation where Ian is being treated, they met Dr. Brain Tseng who is conducting cutting edge research on Duchenne MD, which is the type of the disease Ian has. Dr. Tseng is a pediatric neurologist and researcher working to understand how mice, bred to exhibit Duchene MD, build muscles without dystrophin, a protein that helps keep muscle cells intact. Understanding how that works could be a major breakthrough in learning how to treat and possibly cure the disease. Encouraged by having one of Ian’s doctors conducting this research on their son’s disease, the Sharps resolved to set up a foundation to raise money that would go directly to funding that work. Then they organized the Hike for Hope events to get the community involved. Last year hundreds of people came out for the inaugural Hike for Hope. Our community gave $25,000 in cash and a priceless amount of emotional support for the cause. An article about the event in The Aspen Times convinced a Carbondale couple to turn their Aspen-to-San Francisco bicycle vacation into a pledge ride that netted $5,000 for the cause. Every last dollar raised went directly to the scientists driven to find a cure for this disease. Can you feel it yet? That’s hope!It starts with a wish. There are tears. There are unanswerable questions. There are feelings of despair, helplessness and profound sadness. Finally there comes acceptance. And if it is left at that, the wish is set aside and remains just a wish.Once in a while, though, a person can’t find peace so they take that dream and start to wrestle with it. Grief and anger fill them with doubt, and they beat the dream up and tear it apart. Eventually, if they are strong enough, they find that they can’t destroy it. They pick it up and carry it with them. But dreams are heavy. Even the strongest family can’t hold it high forever. That’s when we can help. If we come together to carry it, we can give one another an occasional rest without the dream ever having to fall back to earth and risk being destroyed. That’s what community is. Sunday morning you will wake up and know that a wish is being transformed in this town that is oftentimes wonderful in ways that aren’t as obvious as mountains piercing the sky or drifting snow softening stones.Last year I learned that hope is real. I saw it in the faces of a community coming together. I felt it a hug from an old friend. I heard it in the laughter of people optimistic about what tomorrow will bring. Hope is faith. Hope is action. Hope is what keeps us going.Hope is that you are a part of it. Come on, let’s finish this thing together.This Sunday morning at 7:30, you can do something good for yourself and for others at Buttermilk ski area. Contributions can also be made to Hike for Hope at hikeforhopemd.com. Roger Marolt can be contacted at roger@maroltllp.com