Aspen boy with heart of a lion faces disease
January 5, 2005
Eleven-year-old Ian Sharp of Aspen has the heart of a lion, but unfortunately, his muscles don’t always match his bravery.Ian is passionate about hitting the slopes of Buttermilk on his skis, doing lap after lap down Ridge run, over three jumps and a picnic table in a terrain park then back up the Summit Express chair lift.He hits the slopes every weekend with his brother, Ty, against his doctors’ wishes.”They don’t recommend skiing,” said Ian’s dad, Bob Sharp.”I don’t care,” shouted Ian with a mischievous grin and that extra dramatic flair that 11-year-olds frequently muster. He doesn’t want to give up skiing for anything.Ian, a fifth-grader at Aspen Middle School, and his family discovered about one year ago that he has Becker muscular dystrophy, a disease that degenerates muscles but is slower and less severe than the more common Duchenne type.Ian is supposed to stay off the slopes because getting up is stressful on his muscles. He also had to give up a budding football career for the same reason. The bottom line, said Carole, his mother, is adding stress to his muscles can accelerate their wasting.
It makes for interesting decisions on Carole and Bob’s part. Wednesday, for example, it would have required chains and shackles to keep Ian off the slopes when schools in Aspen got canceled for a snow day.”The number one thing the doctors say is let him be a kid,” Carole said.So they still let him hit the slopes and trust that he will use his good judgment not to overdo it. And on those days when he skis, Carole works longer with Ian at night, helping stretch his tired muscles.Athletic familyBob and Carole are typical Aspen fitness junkies. He is an expert rock climber. She is a former competitive cyclist who still regularly rides. When Ian was born, he didn’t alter their outdoor lifestyle. He was always hauled along or tagged along on hikes.When Ian developed enlarged calves at age 3, family and friends figured he fit the athletic mold of his parents. But Carole also had an uneasy feeling about it. Ian fell behind on hikes and was often tired.”My legs just cramp up and it’s hard to walk,” he said.Even after various doctors told her Ian would grow into those big calves, she remained nervous. When her son was in third grade he went out for football but experienced trouble picking himself up off the ground. In fourth grade, Ian told his parents he just couldn’t handle the rigors of recess, PE class and football all in one day.
His PE teacher in third and fourth grade agreed with Carole that maybe something was wrong. He referred them to a local doctor, who immediately directed them to the muscle clinic at Children’s Hospital in Denver.Dec. 5, 2003, when Ian was diagnosed with muscular dystrophy, is a date etched into the Sharps’ memory.Mice provide hopeIan is a good-looking kid with long blondish hair that makes him look sort of like a California surfer. He is always smiling and very nonchalant about his disease.He is undergoing no treatment to speak of at this point. He takes muscle-building creatine, dietary supplements and stretches a lot. Children’s Hospital monitors his condition every six months.Bob and Carole have some relief knowing Ian doesn’t have Duchenne muscular dystrophy, which usually kills people in their 20s. The effects of Becker muscular dystrophy can be broad. It acts slower and is more variable than the more common type.”People have lived into their 80s using just a cane,” Bob said.There is no way to predict how the disease will affect Ian. Meanwhile, Bob and Carole have placed their hopes in research on laboratory mice.
Dr. Brian Tseng, a medical researcher and doctor of pediatrics at Children’s Hospital, is examining mice that lack the same dystrophin protein as boys with Duchenne and Becker muscular dystrophy. But the mouse lives a full lifespan and voluntarily runs eight to 10 kilometers per day. It cannot be distinguished from a normal mouse.Tseng told the Sharps in an e-mail he hopes his research will “uncover the mouse’s secrets” and help with a cure, although he warned that nothing will happen overnight.The Sharps have contributed to the Muscular Dystrophy Association, famous for the Jerry Lewis-hosted telethons, but plan to start their own foundation to contribute to Tseng’s research.”We’re hoping that sooner rather than later they’re going to find a cure,” Bob said.Their first fund-raising for Tseng’s work will be Saturday and Sunday, Jan. 15 and 16, in Aspen. The Hike For Hope will feature a cocktail party and silent auction Saturday from 4 to 7 p.m. at Vectra Bank in Aspen, then a race or noncompetitive hike up Buttermilk at 7:30 a.m. Sunday.Preregistration for the race-hike is at the Ute Mountaineer Jan. 10-15 or at Bumps on race day from 6 to 7:15 a.m. A minimum donation of $15 is required. All proceeds go to Tseng’s research.The Sharps plan to make this the first of regular fund-raising events by their proposed foundation. People who want to contribute to the cause without hiking up Buttermilk can visit http://www.active.com/donate/hikeforhope.Scott Condon’s e-mail address is email@example.com.