State - Source of inspiration Fatal illness won't slow teenager's spirit

By Frank Konkel Livingston County Daily Press & Argus (Howell) PINCKNEY, Mich. (AP) -- Nick Torrance and his family live every day as if it could be his last. Each day, it could be. A shy 15-year-old incoming freshman at Pinckney Community High School, he suffers from Duchenne muscular dystrophy, a fatal variant of the muscle-wasting disease he's borne all his life. Doctors tell him and his parents, Rob and Jean Torrance, that there is no known cure for the disease. The average life expectancy for a patient with Duchenne's, they say, is anywhere from late teens to mid-20s. On extraordinarily rare occasions, a patient with Duchenne's lives to be 30. Though his muscles have long since deteriorated, relegating him to a motorized-power chair, his mind is razor-sharp. He knows he's been fighting an uphill battle all his life, just to live. It's not easy. "It's OK to be in a wheelchair," he said. "But every once in a while, I have a meltdown." How he doesn't break down every day under the weight of his fate is beyond his father. Rob Torrance, a stay-at-home dad by virtue of a job layoff last year, said children like Nick are more inspirational than any athlete, politician or celebrity. Rob Torrance used to volunteer at Camp Cavell in Lexington, where special-needs children -- including his son -- experience one week of summer camp. He was so inspired, he and his wife organized an annual motorcycle poker run five years ago called Nick's Ride that raises money for the Muscular Dystrophy Association. Many families raising children who suffer from muscular dystrophy depend on the Muscular Dystrophy Association for financial help and equipment, though funding for the organization has dwindled in recent years. On July 31, the Torrances held their fifth annual fundraiser, again raising several thousand dollars that will go toward providing paid summer camp for children afflicted with muscular dystrophy. "Here's a bunch of kids with disabilities, with problems you and me can't really imagine, and they're just having a great time, loving life," Rob Torrance said. "To me, they're like superheroes. They're my heroes. I see them, and I just think, 'Wow.' They know what's down the road for them and they keep fighting. They don't let it get to them." As a newborn, Nick was the answer to Rob and Jean Torrance's prayers -- they'd been trying to conceive for years. As a baby, Nick was "Just like any other child," according to his mother. He didn't crawl, but rather scooted everywhere; otherwise, he was a normal toddler. Though he walked "a little late," his parents remained unconcerned, in part due to the muscular development of his lower body. Rob Torrance's voice still perks up when he describes remembering his son's massive calf muscles. At age 3, the proud parents thought he might be the next Arnold Schwarzenegger. "I thought he was going to be a bodybuilder or a football player, based on the size of his legs," Rob Torrance said. "His legs were huge. At that time, we thought there was no limit to what he could do." It was a short-lived feeling. Nick began to slow down, prompting a visit to doctors. Jean Torrance said her son was "never hyperactive," like typical young boys, but she became worried when he frequently seemed uninterested in physical activity. On occasions when he was active, the boy tired easily. Doctors at the University of Michigan Medical Center performed myriad tests on Nick, discovering he had dangerously high levels of creatine kinase pumping through his blood. Nick's bulging calf muscles that had his father dreaming of raising a professional athlete turned out to be pseudohypertrophy, a condition where enlarged muscle tissue is eventually replaced by fat and connective tissue. Then came the diagnosis and heart-wrenching news: Duchenne muscular dystrophy is always fatal, and those with it pass away at an age when they'd otherwise be in the prime of their lives. Though research into the disease has progressed in recent years, there is no cure. "We were ... shocked and scared," said Jean Torrance. "There's really no way to explain that feeling as a parent. It's awful. The first few years after the diagnosis were very chaotic and very difficult. Sometimes, you just don't know what to do. All we could do was try to make him as comfortable as possible." Nick lost the ability to walk at the age of 7. It was the first of many things he'd lose, but he's never lost his zest for life. For every negative, he's learned he can find a positive. At Farley Hill Elementary School, his peers pulled him from class to class in a wagon. It was fun, despite his handicap. Now an incoming high school freshman, he can move his fingers enough to play video games or operate his power chair, but can no longer lift his arms or move his legs at all. He recently had to have his spine fused to keep from leaning over because his back muscles have broken down, essentially allowing his upper-body weight to crush his internal organs prior to the surgery. Rather than focus on the negatives, he instead remembers getting back some of his independence with the use of a power chair. He'd hated the standard wheelchair he used prior to the power chair because it was slow and exhausting. The power chair, operated by a joystick that resembles a video game controller, gets him almost anywhere he needs to go. "One second, he's there; the next second, he's gone," said Jean Torrance, regarding her son's newfound independence in the power chair. "Like a typical teenager." Unlike a "typical" teenager, he depends on those around him to accomplish tasks most people without a disability wouldn't give a second thought about, like eating or opening the door. As a teen, relying on others is, by nature, difficult for him. To be dependent at a time when all you want is independence is a difficult blow to bear. Though he loves being outside, Nick has to be careful venturing outside the friendly confines of his home in Pinckney. Hot temperatures increase his risk of an asthma attack because the muscles that move his lungs are weak. Cold temperatures elevate his chances of catching pneumonia, to which he's extremely susceptible. As such, many of his favorite things to do are indoor activities, like playing video games on his PlayStation 3 or watching sports. He and his family get free tickets to Michigan State University and University of Michigan athletic events sometimes through Ann Arbor's C.S. Mott Children's Hospital. Many of the college players he's watched over the years -- now professional athletes -- have given him signed jerseys or memorabilia, which he treasures. Because of his disability, he has grown painfully shy over the past decade. Jean Torrance said her son doesn't like to open up because there's "always that fear that he's not accepted." Kim Maas, his school aide since fourth grade, has moved up each grade with him, helping him handle mainstream classes like forensic science, which he enjoys. While learning disabilities aren't uncommon for those with Duchenne muscular dystrophy, Nick works hard and excels in his school work. In many ways, his parents say he is just like any other teenager his age. He more than holds his own in arguments and can muster quite an attitude, said Jean Torrance. "We don't treat him differently than any other kid anymore," said Rob Torrance. "Just because he's in a wheelchair doesn't mean he's that frail. We treat him like any other. He has rules and certain jobs he has to do, like reminding me to take out the garbage. We give him responsibilities." Nick doesn't know what the future holds. He doesn't like to talk about it much. He lives in the present, remembers the past and forgets about figuring out the future. For him, living each day like it could be his last isn't a cliche; it's a necessity. He's learned that he can choose to embrace each day or feel sorry for himself. In that way, he's wise beyond his 15 years. He and his family don't sweat the small stuff -- they're too busy living. "I don't let the little stuff bother me," he said, as told to his father. The little things don't bother his parents, either. While the past 15 years have sometimes been difficult, the foundation of the Torrance family's bonds are built on unconditional love. They are, Rob and Jean Torrance said, unbreakable. "It's been stressful sometimes," Rob Torrance said. "But we try to make every day a good day in case its his last." Published: Tue, Aug 24, 2010

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