A life ends early, but not without a share of fun, humor 17-year-old loses 'valiant fight' with MD


Requiem for a fighter:

* "Last winter, when he got out of Good Samaritan Hospital, he went to Bennett [Institute for Sports Medicine and Rehabilitation], and they needed some players for football. Everybody had to be in a wheelchair. So I said I would help out, and I got in a wheelchair. I was on Steve's team. He made three touchdowns and he was really happy. He was high-fiving." -- David M. "Mac" Schaeffer of Eldersburg, father of Steven P. Schaeffer.

* "The other night, Dan [Schaeffer, Steven's older brother] was doing something on the [home] computer and he did something wrong. Steve's voice came on and said, 'This is the MacIntosh and you have just p me off.' We laughed. . . . He was quiet, but once you got to know him, he was very funny. He had quite a sense of humor." -- Carol Dickinson of Westminster, Steven's mother.

* "His work was B-plus or better. He had a very good mind. He was his own harshest critic. . . . I learned a lot from him. I learned the virtue of patience. . . . [Through him] I got insight into young people's lives." -- Paul H. Smith, instructional assistant for Daniel and Steven Schaeffer at Westminster High School and home teacher for Steven after he became too ill to attend school last fall.

* "It was the way he accomplished things. Even though he had MD [muscular dystrophy], he tried to do everything. That's what made him a special person." -- Brett Haines, 17, a member of the class of 1993 at Westminster High and a counselor in a camping program for the disabled at Hashawha Environmental Center, where Steven was a counselor in training.

* "We are neighbors. . . . We have had to watch him progressively lose his life to muscular dystrophy. He lost that battle yesterday after a long, valiant fight." -- From a letter accompanying a donation to the Muscular Dystrophy Association in Steven's memory the day after his death on June 14.

The 10th annual Muscular Dystrophy Carnival at the Westminster city playground raised about $400 Wednesday night. Members of the summer recreation staff, some of whom knew Steven at school, donated this year's carnival proceeds to the Muscular Dystrophy Association in his memory.

Steven Schaeffer was 6 foot 1. He had brownish-blond hair and mischievous eyes, and he packed all he could into the 17 years before the illness killed him. He earned a diploma from Westminster High School and a certificate in computer technology from the Carroll County Technology Center. He died four days before his graduation ceremony of complications from MD.

Steven had Duchenne muscular dystrophy, the most severe childhood form of the disease. It affects only boys; girls can be carriers.

"When a young boy is born, he appears to be perfectly normal," said Katie McGuire, patient services coordinator for the Maryland chapter of the MD Association. Usually, parents of boys with the disease notice that between the ages of 2 and 6 their sons fall often or have difficulty getting up when seated or reclining.

The disease weakens muscle groups, Ms. McGuire said. When the heart and lung muscles become involved, usually in a young man's late teens or early 20s, it is fatal. There is no cure, although doctors at Johns Hopkins Hospital have found that steroids extend the time some youngsters can walk.

In 1986, researchers identified the gene for Duchenne muscular dystrophy. One year later, they found that victims lack a gene that manufactures a specific protein. Researchers are making progress toward treatment, said Ellen Torres, Maryland chapter district director.

Steven was diagnosed when he was 6 months old. His parents had learned that Daniel, now 19, had Duchenne muscular dystrophy, so they had Steven tested.

"Then, we knew," his mother said. She leaned back against the sofa in the house near Westminster that has become too quiet and talked about her sons.

Daniel and Steven did as much as their bodies would let them. They loved Camp Maria in Leonardtown, where MD victims can swim and go boating and "get to be just regular teens, having fun at camp," she said.

Both participated in adaptive sports at the Bennett Institute. Steven played wheelchair soccer and football, boccie, and took part in track and field and a wheelchair slalom.

"Steve was very competitive," said Gerry Herman, director of sports and recreation for the physically challenged at Bennett Institute. "It was very important to him to be involved in sports."

Both swam in the pool at Mr. Schaeffer's house when they visited their father. Both liked the Orioles. Steven got interested in computer technology. Daniel studied art at Carroll Community College, then transferred to Western Maryland College, where he will be a senior this fall.

Steven seemed to improve in the few weeks before he died, and his mother thought he might be able to go to graduation. But then his heart failed. His friends came and spoke from their hearts at his funeral.

"I just didn't realize Steve had touched so many lives," his mother said. It helped, she said. "That's what a small town is, people taking care of each other."

Steven and his father watched the Super Bowl together in January. Steven was worried that the excitement might affect his heart, but his father told him not to worry, just to have fun. That's how Mr. Schaeffer wanted his son's final time to be.

"I think you loved him very much," a visitor suggested.

"I did," he said. "He knew that."

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