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home : features : people of faith

5/10/2012 9:00:00 AM
DISABILITIES
Family copes with muscular dystrophy
Derek with his service dog, Matrix.
Derek with his service dog, Matrix.
Empire Service Dogs will participate in the Freihofer's Community Walk June 2 to raise money for the organization, which trained Dereks' service dog. See www.freihofersrun.com/community_walk.htm. Also, the National Association of Letter Carriers will raise money for muscular dystrophy research at a golf tournament June 10. Call Michael Curran, 368-3781.
BY ANGELA CAVE
STAFF WRITER

Like most 11-year-old boys, Derek Murphy prefers gym over other classes and has played on baseball teams. He likes to swim at summer camp and sled on winter break. He even knows how to charm his parents into letting 10 of his friends sleep over at their North Greenbush home.

But in some ways, Derek stands out from his peers at Bell Top Elementary School in Troy. He can no longer run around a baseball field - or go anywhere without the assistance of an adult.

Derek has Duchenne muscular dystrophy, a degenerative muscle disease affecting boys almost exclusively that involves rapidly worsening muscle weakness and disability. Most patients succumb by their mid-20s.

Derek uses a motorized wheelchair with special devices to help him stand and sit. Since his arms are weakening, he'll soon get another device to help him lift them. He uses a stair lift to get to his second-floor bedroom; an aide and a service dog named "Matrix" help him navigate his classroom.

His friends have adapted, even helping him find ways to participate in sports. "It's amazing how kids have adjusted to accept Derek for Derek," said his mother, Sue Ellen, a neurology caseworker.

"It may take him longer to do [something], but he's going to do it," added his father, John, a Menands police officer.

The Murphys, parishioners of St. Michael the Archangel parish in Troy, have two other sons, 15-year-old John and 13-year-old Sean. The family has journeyed through Derek's diagnosis and degeneration with faith, accepting a grim prognosis and vowing to find a cure for and raise awareness of muscular dystrophy.

Mr. and Mrs. Murphy said they sometimes get angry with and blame God, but they believe everything happens for a reason.

"[God] picked Derek," Mr. Murphy said - and Derek "has accepted God's challenge to try to teach people what life is about. There's always someone else worse off."

Progression
Derek was diagnosed at two and a half years old. He had already displayed some unusual traits: crawling "commando style" and gait that was "off" despite physical and occupational therapy. A suspicious doctor confirmed Derek's diagnosis.

Until Derek was eight, he played on baseball teams, though he couldn't run fast and needed help getting up if he fell. Once, he stole a base: "I just thought that was incredible," Mr. Murphy said. "He just never gives up."

Derek's physical limitations don't stop his swift mind. His parents are often challenged by his questions: "Mom, how could [God] make everything?" "[Heaven] just goes on forever, Dad?"

At age seven, Derek was the 2008 New York State Muscular Dystrophy Association Goodwill Ambassador. The Murphys still help with fundraisers for medical research or for The Bus Stop Club, a Capital Region organization for siblings of children with chronic illnesses, and they travel to give talks about muscular dystrophy.

The Murphys frequently have to battle insurance companies to cover Derek's mobile devices and medical needs. His wheelchair would have cost $45,000 without help; amenities like his specialized bed are not covered. Friends and family sometimes host fundraisers to help.

Puppy love
Although Derek welcomed an adaptive sled and the chance to have a dog - "they're fluffy," he remarked - he has struggled to accept each new aid to his mobility. Matrix the dog now accompanies Derek to school and Mass. A representative from the organization that trained Matrix recently spoke to Derek's faith formation class at St. Michael's.

Matrix "can push the elevator button," Derek explained, and "he can pick up stuff" like pencils at school or the television remote at home. The dog sleeps in Derek's room and alerts his parents if he needs repositioning in bed or a trip to the bathroom.

Mr. and Mrs. Murphy told The Evangelist that Derek's condition doesn't excuse him from doing good deeds: He's on rotation to deliver nightly dinners to their 92-year-old neighbor. Large slumber parties like the 10-friend gathering are special treats.

But it's OK to treat him like a special kid sometimes - because his parents know he is one.

"He's taught us what life is about," Mr. Murphy said: "family and friends and living each day like it's your last day."



Reader Comments

Posted: Sunday, May 20, 2012
Article comment by: June Freda

Thank you for sharing the heartfelt story of Derek and his special family. I think Derek should write his story and have it published in book form. I am sure that many people would benefit from it.



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