DES MOINES, Iowa — The Muscular Dystrophy Association of Iowa is holding its annual gala on November 7 at Des Moines’ Embassy Suites.
Channel 13’s Sonya Heitshusen will be part of MDA’s “Muscle Team,” made up of athletes and MDA ambassadors like 7-year-old Ben Schwartz. He was diagnosed with Duchenne Muscular Dystrophy April 18, 2016.
DMD is a rare genetic disorder that affects about one in 5,000 boys. It causes the muscles to become weak and damaged over time, eventually leading to death.
Ben’s parents, Brian and Jennifer Schwartz, say they noticed some physical disabilities prior to Ben’s diagnosis, but they didn’t think it was anything serious until his pediatrician ordered some blood work.
“I’ll never forget the look on his face,” says Jennifer, describing the doctor’s reaction to the results. “It told me something was really wrong.”
Doctors told them not to Google DMD. That night, Brian searched the Mayo Clinic’s website for symptoms, treatments and the prognosis.
“I read up on it and it was like check, check, check. He’s got this, he’s got this, he’s got this.” says Brian, fighting back tears.
He asked God to spare Ben and take him.
“I just fell to my knees and I’m like, ‘Take my ability to walk and run and let Ben live his life,'” he said.
Fortunately, Ben and his family had some support. The Muscular Dystrophy Association was there when Ben was diagnosed and continues to provide them with valuable resources, like a wheelchair, when necessary. Ben is also taking part in a clinical trial funded by MDA.
“There has been more research the past five years than the previous 50 years combined,” says Brette Dowson, development director for MDA Iowa. “One thing that is really cool about MDA is we’re considered an umbrella organization, so we cover 43 different types of muscle disease.”
A breakthrough in any one of them could lead to life-changing and life-saving treatments for Ben.
“We know it’s coming,” says Jennifer. “Funding is a big hurdle and it literally changes lives.”
Tickets for the gala can be purchased here. Proceeds for the event go toward MDA’s mission to save and improve the lives of kids and adults with muscular dystrophy, ALS and related diseases.