By Sue Wambolt, Contributing Writer
Hudson – According to the Parent Project Muscular Dystrophy (PPMD) website, “Duchenne muscular dystrophy (DMD) is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year).”
Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.
John and Sheryl Marrazzo began their journey with DMD in September of 2010 when their then 7-year-old son, Jake, went to the pediatrician for his annual physical. The doctor was concerned because of Jake's lack of weight gain and because he was displaying some minor physical limitations. She referred Jake to a genetic specialist. Following multiple tests and screenings, Sheryl received a phone call with the results which indicated possible muscular dystrophy.
After doing some research, both John and Sheryl knew right away that Jake had Duchenne muscular dystrophy (DMD), a diagnosis that was later confirmed by both the genetic specialist and a neurologist.
“That was one rough night with lots of tears flowing and so much uncertainty,” Sheryl said. “It was a tough pill to swallow. After feeling both incredibly sad and mad, we decided that we needed to start fundraising for Jake and others also suffering from DMD.”
The Marrazzos visited the Massachusetts Muscular Dystrophy office in Westborough where they learned more about DMD and the ways that they could help raise money and awareness.
“We had someone from the muscular dystrophy office come out and talk with Jake's class to explain a little about his disease because he walks and runs slower than his classmates and sometimes the kids were not so patient,” Sheryl said. “We thought it would help to explain and it did.”
Armed with information, the Marrazzos knew that they needed to raise money to help find a cure for DMD while also helping others less fortunate than them.
Joined by over 80 walkers, John and Sheryl organized and participated in their first Muscular Dystrophy Association Muscle Walk in 2012. Together, they raised over $18,000.
“I knew that day I needed to continue the fundraising,” Sheryl said. “It has helped me deal with DMD.”
With aspirations to continue organizing yearly MDA walks, the Marrazzos created a Facebook page and a website and came up with their team name, “4 Jake's Sake.” Their second walk in 2013 garnered over $21,000. The next walk will take place Saturday, March 29, at Gillette Stadium in Foxborough.
Locally, there will be a Star Wars-themed Millennium 5K 4 Jake's Sake Sunday, May 18, starting and finishing at the Elks Lodge, 99 Park St., Hudson. Registration begins at 8 a.m., the Fun Run begins at 9:30 a.m., and the 5K begins at 10 a.m. Early registration is $25; $30 the day of the race. Early registration for the Padawan Run (kids under 13) is $15; $20 the day of the race.
Proceeds from this event will go toward making Jake's home wheelchair-accessible. Additional funds will go to PPMD, a nonprofit organization committed to ending Duchenne. To learn more, visit www.parentprojectmd.org.
For information about Jake and his journey, other upcoming events, or to register for the Millennium 5K, visit www.4jakessake.com.