Walk seeks cure for muscular dystrophy
PRAIRIE GROVE – Josh Duda’s goal for today is to walk a two-mile course without his legs becoming sore because of his muscular dystrophy.
Although it might be simple for most 13-year-old boys, Josh’s ability to participate in the Muscular Dystrophy Association Muscle Walk in Rockford makes him stand out from many other children with the disease who use wheelchairs.
“Getting out there will get more people to notice how many kids actually have it,” Duda said. “People right now really don’t notice, and a lot of people don’t even know what it is.”
Muscular dystrophy is a group of inherited disorders that can involve muscle weakness and loss of muscle tissue, according to the U.S. National Library of Medicine.
Duda will participate in the walk with his mother, Tracy; father, Stan; and sisters, Ashley and Allison.
The Duda family has raised about $20,000 for research in the past five years by participating in walks for the MDA and the Parent Project Muscular Dystrophy.
The family’s goal is to raise $370 for the Muscle Walk. They had raised $300 as of Friday afternoon.
It costs $74 for every minute of muscular dystrophy research, said Mary Ann Matus, executive director of the Rockford chapter of the MDA.
The Rockford chapter of MDA provides care for more than 300 families through services such as free flu shots, support groups and funding research.
With about 150 walkers signed up, the organization hopes to raise at least $10,000, Matus said. To date, it has raised more than $5,000.
“Really it’s to help us find a cure and help [patients’] live lives to the fullest,” Matus said. “We want to make sure that we have all the research and equipment that they need to live their life.”
Crystal Lake resident Pete Liebenow, an adult afflicted with a form of muscular dystrophy, also is participating in Saturday’s walk.
Josh Duda was diagnosed with muscular dystrophy at 4 years old. In 2010 he found out he specifically had Becker muscular dystrophy – a degenerative disease, according to the MDA website, that primarily affects voluntary muscles and causes generalized weakness of the muscles.
Becker’s symptoms are not as severe as other types of muscular dystrophy, Tracy Duda said.
Josh Duda can’t play sports and is clearly weaker than the average teenager, Tracy Duda said. He completes daily stretches and takes vitamins every day, wary of how the disease could affect his heart, she said.
Currently, there are 43 types of muscular dystrophy, Matus said.
Research led to the cure in 2006 of “Pompe,” a type of muscular dystrophy that interferes with the processing of carbohydrates and causes weakness of respiratory muscles and muscles of the hips, shoulders and upper arms, according to the MDA website.
“We just continue with the fundraising and trying to keep hope that he stays healthy,” Tracy Duda said. “We just keep looking forward and praying for the cure.”
Muscular dystrophy doesn’t come to mind when planning his future, Josh Duda said.
“It’s just better for me not to think about it,” he said. “But I feel like everything is going to be all right.”