THE WORLD ACCORDING TO BENJAMIN
by Phil Ivory
Dinosaurs and distant planets, basketball stars and karate belts. All of these are important parts of the world according to Benjamin Cumbo, who's 8 going on 9 and has Duchenne muscular dystrophy. Early this year, Benjamin's universe took on new dimensions when the third-grader was chosen as MDA's 1996 National Goodwill Ambassador.
This very special job requires Benjamin and his family to travel across the country making friends for MDA.
"He's very excited," says Benjamin's mom, Deborah, who works for the national newspaper USA Today. "One of the first things he asked was: is he going to get to visit 24 states? Why 24? I don't know, but he's very much looking forward to traveling."
Four years ago, the Cumbo family invited a friend over to watch the Super Bowl. The friend, a doctor, noticed that little Benjamin had trouble walking up the stairs and urged the Cumbos to arrange a check-up. A series of tests were done, leading to a diagnosis of Duchenne, the most common and severe childhood form of muscular dystrophy.
Benjamin's father, Ben, who works for the Department of Defense in Washington, recalls the pain and confusion he and his wife suffered. "So far as your world crashing in on you in one fell swoop, it occurred right then." Now, at age 8, Benjamin's gait is slowed by the disease but he is able to walk unassisted and remains very active in school and other activities.
At the time, the Cumbos were referred to their local MDA office and learned about the services MDA provides. "That helped us, because you immediately feel alone in the process. But MDA was there," says Benjamin's father.
Benjamin's parents worried about how the disease would affect the hopes and dreams they had for their son. "We went to every support group meeting," Ben says. "Those were extremely helpful. It gave us an opportunity to unload fears and talk about things."
Religious faith and a commitment to focusing on the positive aspects of life helped the Cumbos come through this dark period. They gradually became active in local MDA fund raising and even found themselves in the position of talking with and counseling other parents who had just learned that their children had neuromuscular diseases.
The Cumbos live in Upper Marlboro, Md., near Washington. Benjamin has two sisters, Tyler, 6, and Erin, 16, who came with her brother to MDA summer camp to be his camp counselor.
Benjamin had a great time at camp, playing games with other youngsters with neuromuscular diseases and competing in a way that's difficult for him at school. "It's an experience where the playing field is level" is how his father characterizes MDA camp.
But even during the rest of the year Benjamin finds ways to take part in swimming, baseball and karate, in which he holds an orange belt.
"They said it might get a little more difficult when he gets into the sparring end of it," says his father. "But his knowledge and his ability to comprehend what he has to do is good. We were real proud about him getting his belt."
Benjamin is already looking at the next level, the red belt. "That sort of typifies his spirit," says his dad. "Trying to keep going and doing the best he can." Benjamin loves professional sports, too, and his favorite basketball player is Grant Hill of the Detroit Pistons.
A lover of science and math, Benjamin likes exercising his mind as well as his body. "He's a '200 questions a day' kind of kid," Ben says. Benjamin won a prize for a special science project: he designed a kind of monkey bars using Velcro-coated gloves and bars, for kids like himself who have difficulty holding on to regular monkey bars.
He also enjoys learning how to draw with his home computer and reading about dinosaurs and astronomy. One day he'd like to go around the world. His new role with MDA will be a good start, as it takes him to numerous cities where he'll make appearances and meet with national and regional MDA sponsors.
Benjamin was selected for the position after serving as a local MDA Goodwill Ambassador and after appearing with his family on the national broadcast of the 1995 Jerry Lewis "Stars Across America!" MDA Labor Day Telethon.
"I only got to meet Benjamin briefly during the show," says MDA National Chairman and Telethon host Jerry Lewis. "Even so, there was something about that smile of his that stayed with me. He's got this positive, determined spirit that's hard to resist, and impossible to forget." Since then, Jerry and Benjamin have had the chance to become good friends.
Another friend Benjamin made during the past year was Tomás Díaz, a youngster from Houston who has spinal muscular atrophy and served as MDA's National Goodwill Ambassador for 1995.
"Tomás and his family really did a spectacular job for MDA last year," Lewis says. "I think meeting Tomás gave Benjamin a new friend and a sense of the importance of the job that lies ahead."
Throughout the year, Benjamin will be here, there and everywhere, letting people know about MDA's mission. And when the Telethon rolls around, Benjamin will be there, too, joining his friend Jerry on-stage to show millions of viewers that, in the world according to Benjamin, quiet determination and a positive spirit are powerful weapons.
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