Family, friends, faith keep Murphys going

"We got knocked out like you wouldn't believe," said John Murphy. Added his wife, Sue Ellen, "Some days are harder than others."

The parishioners of St. Michael the Archangel Church in Troy were referring to the day four years ago when they learned that their son Derek, then 2, has Duchenne Muscular Dystrophy, a terminal illness.

After reeling from the shock, the Murphys, who have two older boys (John, 10, and Sean, 8), went into action.

"We knew we wanted to focus on the positive rather than the negative," Mrs. Murphy said. "If we were going to get through this as a family, we needed to learn as much about the disease as we could."

Disease

The most severe form of muscular dystrophy, Duchenne is a degenerative disease of the neuromuscular system that strikes boys between two and six. There is no cure.

Initially, victims have trouble running and walking; as the disease progresses, they become wheelchair-bound.

In the late stages of the disease, the muscles surrounding the heart and lungs are affected, requiring patients to use a ventilator to breathe. Eventually, the heart fails.

Friends

Through what they have come to call the three "F's" -- family, friends and faith -- the Murphys have found support, concern, hope and encouragement.

"We have a very large family, and everyone was devastated by the news," Mrs. Murphy said. "But everyone was also willing to help."

Family and friends began to organize fund-raisers, like a recent comedy night at a local firehouse, golf tournaments, a bowl-a-thon and walk-a-thons.

To date, the events have raised more than $40,000 for research.

Faith

Speaking of the faith part of their plan, Mr. Murphy said: "We go to church regularly with the boys. In the beginning, we'd hear a homily and say to each other, 'Those words seemed to be directed right at us, at our situation.' We'd talk about the message of the Gospel and the homily, and then apply it to our situation. The most important thing we learned from our church community is what is important and what isn't."

Noted his wife, "Our faith has given us strength to face this disease. The people in our parish have been very supportive, people that we didn't even know."

"We pray as a family," Mr. Murphy added. "There are lots of challenges out there for us, now and in the future. We pray for a cure for muscular dystrophy, but we know that God has a plan for us and that Derek is very much a part of that plan. We believe that our purpose is to make others aware of this disease, and we're doing our best towards that."

Supporters

The couple enrolled in a support group shortly after hearing Derek's diagnosis.

"These are parent and family information groups that regularly meet for support and educational purposes," Mrs. Murphy explained. "Through them, we learned one very important thing: We may not be able to change the disease, but we can certainly increase public awareness of it."

"We don't push raising the money as much as we want to push the [need for] awareness of Duchenne," Mr. Murphy said. "We figure that if the awareness is there, the money will come. The money is needed for research to find a cure."

Keeping on

Derek, a kindergartner at Bell Top Elementary in East Greenbush, can still walk and run, although he regularly falls behind other children and frequently gets tired.

Twice a day, the Murphys use special exercises to stretch and strengthen Derek's muscles.

"Derek is a real trooper," his mother said. "When that little boy gives me a certain look, I know he's trying his hardest. When he's running outside with his brothers and I hear his little voice calling, 'Hey, guys, wait for me!' I have no question that what we're doing is well worth it."

(For more information on Duchenne Muscular Dystrophy, go to www.mdausa.org. Donations can be mailed to the Derek Murphy Fund, 1 Matterhorn Drive, Wynantskill, NY 12198.)

(5/24/07) [[In-content Ad]]