Mary Matusiak was determined to stay independent.
The Orland Park resident and Hometown School teacher in Oak Lawn traveled around Napa Valley in California with her daughter Sam while in a wheelchair, even though parts weren’t paved that well. She rode a subway in New York City, roller coasters at Cedar Point in Ohio, flew to Negril, Jamaica and made several other efforts to make sure she had as much independence as possible.
These were no small tasks since Mary was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gherig’s disease, a neuro-muscular disease that slowly paralyzes different areas of the body. Since the diagnosis in Feb. 2011, Mary Matusiak lost strength in her arms and legs, as well as her breathing capacity, but kept fighting. Mary died on June 3, at age 52.
“The quote we have on our team shirt is ‘The happiest people don’t have the best of everything but they make the most of everything,’” said Sam Matusiak, about their ALS Walk for Life team. “We called the team ALS Sucks because there’s certainly nothing good about it. It’s easy to give up and do nothing, dwell on how horrible it is. Or you can get out there and do the best you can.”
Sam Matusiak and her family, friends and neighbors will be walking Sunday among an estimated 6,000 other participants in the 12th annual Les Turner ALS Walk4Life at Soldier Field. The ALS Sucks team has raised about $8,000 for disease research, and expect to raise about another $1,000 by Monday, Sam Matusiak said. Fundraising has been a natural progression for Sam Matusiak since her mother died. She originally moved back to Orland Park to help take care of her. Sam said her fundraising efforts will continue year-round, long after Sunday’s event.
“The disease is very underfunded,” Sam Matusiak said. “Currently there is no cure, nor are there any drugs with any strong effect on the symptoms.”
Tapping into area support groups, both in person and online, helped Mary and her family cope with the illness.
“Meeting people you can identify with helps,” Sam Matusiak said. “It’s not a common disease so meeting people who have dealt with it or came up with ways to deal with it is huge. She was the cheerleader at the support meetings. She really kept it upbeat.”Read more about the Matusiaks and their efforts to raise money for ALS.
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