Brave Lad, 7, Fights Crippling Disease

WILDWOOD — Seven-year-old Mohamed Ali Fathi, a second-grader at Margaret Mace Elementary School in North Wildwood, is just like any other child except as he reaches adolescence, he will eventually lose his ability to walk.
Last August, Zahia and Djamel Fathi learned their son was diagnosed with Duchenne, the most aggressive form of muscular dystrophy, a disease that mainly affects males because it is carried through the X-chromosome.
Early into their young child’s life, the Fathis knew their son was different. They noticed he had difficulty climbing stairs and he has always been the smallest in his class. In first grade gym class it was evident he was unable to jump and romp around like the other children.
After several visits to a slew of doctors and neurologist, including Cooper University Hospital in Camden, Children’s Hospital of Philadelphia and Alfred DuPont Hospital for Children in Wilmington, Del. young Mohammed began physical therapy.
DNA tests revealed Mohamed had a high concentration of CPK (creatine phosphokinase), an enzyme present in the bloodstream, heart, brain and skeletal muscles when there is an injury.
Before their personal impact with the disease, the Fathis admitted that they had never heard of it before. They soon learned that the disease is usually hereditarily passed through the mother’s side, but they had no family history of it.
Soon the Fathis discovered the Parent Project, a Web site devoted to the caregivers of those affected with the disease. The Web site offers the Fathis support by being able to talk with others who share the same problems.
Through the Web site’s forums, parents discuss medications, doctors, symptoms and care to help and support each other.
“We’ve found more answers from other parents than we got from doctors because parents live with the patient,” Fathi said.
Pat Furlong, president of Parent Project, told the Herald she and her husband, both medical professionals, launched the Web site in 1994 because “no parent should be without hope and help.”
Both of their sons were diagnosed with muscular dystrophy in 1984, before the popularity of the Internet, during a time she described as “an empty landscape for parents seeking information.”
“No parent should be in the position we were in,” Furlong said.
So she traveled the world gathering information and asking doctors one simple question: “What would you do if your son was diagnosed?”
As a result, the Web site, focusing on treatment and cure, has a plethora of information, forums, and links that Furlong hopes will “help parents navigate through the changing landscape.”
The Web site provides links to associations that help pay for what insurance doesn’t cover or travel and miscellaneous expenses.
“We look for the best for our son,” Fathi said. Therefore, the family is currently planning a trip to Cincinnati to see a renowned doctor who was recommended by Parent Project members.
“Others ask how we are doing and we feel like they really care,” she said.
Mohamed continues in school and physical therapy.
“He is smart but he doesn’t listen and concentrate. It’s like something is missing. He feels bad because he can’t play soccer games or ride a two-wheel bike and he knows that one day he won’t be able to walk at all. He gets sad when we talk about it.”
“Duchenne Muscular Dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 3,500 live male births (about 20,000 new cases each year),” the Web site explains.
“Duchenne can be passed from parent to child, but approximately 35 percent of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.”
“Muscular dytrophy has changed in the past 10 to 15 years. Boys now live longer with better quality. However, there are things we need to do as a community to continue to ensure treatment and cure so they can have good life spans with normal function,” Furlong said.
“Boys like my son are counting on all of us,” Fathi said. “We want to eradicate this disease from Earth because it is devastating.”
To learn more or donate, visit the Parent Project Web site at www.parentprojectmd.org.