Aiming Beyond Expectation

September 04, 1995|By Mary Gail Hare | Mary Gail Hare,Sun Staff Writer

So far this year Daniel Dickinson Schaeffer has graduated at the top of his college class, written a popular travelogue and designed the flag his hometown will fly into the next century.

This from a young man no one expected would live past his teens.

For all his 23 years, Mr. Schaeffer has battled Duchenne muscular dystrophy, the chronic degenerative disease that has robbed him of strength and made a challenge of the simplest acts. But the same progressive muscular deterioration that killed Mr. Schaeffer's younger brother two years ago has not destroyed his courage and determination to go about the business of living.

"I just want to be like everyone else," said Mr. Schaeffer, a Westminster resident who's planning to go to graduate school.

Carol Dickinson is proud -- but not surprised -- at her son's successes. "He doesn't think he is handicapped. It's an inconvenience, but it doesn't stop him."

The Muscular Dystrophy Association has chosen Mr. Schaeffer for its Maryland 1995 personal achievement award -- "for outstanding achievement and demonstrated success in overcoming the challenges of neuromuscular disease."

He'll receive the honor today during a local segment of the annual Jerry Lewis Labor Day telethon on WMAR-TV.

Mr. Schaeffer graduated magna cum laude from Western Maryland College in June -- the first graduate to cross the stage in a wheelchair. He also may be the first man with Duchenne to receive a diploma from any state college.

Although Mr. Schaeffer occasionally rails against his near total physical dependence upon his mother, he admits "my mom is always there for me to help and encourage me. It's almost like we are best friends, but I know I am still her kid."

At 3, when he couldn't run, doctors detected Duchenne. Less than a year later, his brother and only sibling, Steven, was diagnosed with the same disease, which affects one of every 3,000 male infants born each year. The little boys who played tag around the house soon lost the ability to walk. Both were in motorized wheelchairs before they were 12.

No treatment or cure for the disease is known, and most Duchenne patients do not survive their teens. Steven Schaeffer died June 14, 1993, after struggling for nine months with dystrophy-related heart complications.

"We learned quickly to take one day at a time, make every day count," said Ms. Dickinson, who is divorced from her sons' father, David "Mac" Schaeffer. "It teaches you what is important."

The brothers, best friends and constant companions, shared a sense of humor, private jokes, wheelchair sports, a touch with computers and video games.

"I wish I could play those games with Steve some more," Mr. Schaeffer said and recalled favorite video baseball games. "We would fight about which team we would be. Steve would get mad and give up if I got a home run."

Shortly after Steven's death, Mr. Schaeffer was working on his computer and made an error. He laughed when he heard his brother's programmed electronic voice admonishing him, "You have . . . me off."

Although the room they shared is redecorated and a sofa has replaced Steven's bed, "the memories are always there. I still miss Steve," said Mr. Schaeffer.

Steven balked at attending Mr. Schaeffer's high school graduation five years ago, but "I told him he had to come, because I would be going to his."

Steven died at 17, a few days before his own graduation. The loss was difficult for Mr. Schaeffer, but as a bereavement camp volunteer the last two summers, his experience has allowed him to help grieving children.

"Dan is a good buddy who has a lot of life experience and brings a lot of gifts to the program," said Susan Hannon, camp organizer and bereavement counselor for Carroll Hospice. "He has a good emotional feel for others."

With the children, Mr. Schaeffer organized art projects to help them express themselves.

Although he barely has the strength to offer a firm handshake, Mr. Schaeffer has the arm mobility to work on a computer. "The computer lets me do writing, artwork, all kinds of creative things," Mr. Schaeffer said.

His computer expertise led to a job with the hospice, as an office assistant and editor of its monthly newsletter.

Ms. Dickinson called her son a pioneer, whose "presence inspired those around him to be much more conscious of the needs of the disabled. The main barriers in Dan's life have been architectural and he always found ways around them."

Mr. Schaeffer's legacy to Western Maryland College is that "he prompted it to do what needed to be done," said one of his teachers, journalism professor Terry Dalton.

"He really added something to this campus. He was a constant reminder of his own determination to make the campus accessible for students with disabilities."

As news editor of the Phoenix, the campus newspaper, Mr. Dalton said, Mr. Schaeffer "was determined to get the facts during interviews, despite a disability which made getting around campus more difficult."

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