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Northeast PA MDA Goodwill Ambassador Noah Sienkiewicz - Happenings Magazine — Happenings Magazine

Northeast PA MDA Goodwill Ambassador Noah Sienkiewicz

meet_noahMeet Noah

Find behind-the-scenes photos of the March 2015 cover shoot at the Beaumont Inn!

As a child, Amy Sienkiewicz sat glued to the television for the annual Muscular Dystrophy telethon. She could never imagine how closely the disease would later touch her life. Fast forward to her first-born son’s 9-month well visit where he was diagnosed with Duchene Muscular Dystrophy. Duchene is a common fatal genetic disorder that affects one in every 3,500 live male births. A genetic mutation causes a progressive muscle weakness that starts in the legs and moves its way up the body. By age 9 or 10, Duchene patients stop walking and typically only live into their late twenties.

meet_noah4
With no history of Muscular Dystrophy in either family, Sienkiewicz and her husband, James, were shocked by the diagnosis of their son, Noah. Through the support of family, friends and The Cherry St. Bible Church in Plymouth where James is a pastor, the family accepted that God had a particular plan for their son. “Everyone has problems in life, and we’ve been able to help others through our own example.   Even though it’s hard, we have a beautiful child with whom we enjoy every minute and who makes us appreciate our lives so much more,” says Sienkiewicz.

meet_noah3Jumping, climbing stairs and clowning around happen without a thought for most seven-year-old boys.  For Noah, it is a chore, if not impossible to partake in these everyday moments. Noah thrives in school and has great concern about doing well on tests. He enjoys drawing, building with blocks and playing with his siblings, Josiah, 4, and Bethany 2. But he can often not walk up the flight of steps in his house at the end of the day. “He knows he’s going to stop walking soon. He is mad and frustrated because he doesn’t understand why God won’t heal him,” says Sienkiewicz.

meet_noah2Soon after Noah’s diagnosis, the Sienkiewicz’s became involved with the Muscular Dystrophy Association (MDA). Each year, they put together a team for the annual fundraising Muscle Walk, participate in the Ride for Life fundraiser and attend MDA sponsored events with Noah who is the Northeast PA Goodwill Ambassador. Their reason for strongly supporting MDA is simple, “The more we get information out there, the more money we can raise for research. The gains in research are so much more positive than they were fifteen years ago,” says Sienkiewicz.
This year, Noah participated in the MDA summer camp for the first time. “He finally got it that there are other kids like him, and he’s not alone in this disease,” says Sienkiewicz.  The camp is a week-long sleep-away camp where kids with Muscular Dystrophy have an opportunity to experience everything other kids can easily do.
The Sienkiewicz’s are realistic about the progression of Duchene, but they hope to participate in a drug trial that could help Noah. “The most difficult thing is the worry of what is to come and how so many things in our lives will be affected as Noah’s disease progresses,” says Sienkiewicz.  “We have to be strong for him, but I feel like he’s stronger than me. He teaches people so much more about life than many adults do.”
–Julie Korponai

First photo by Cheryl Kaiser Fine Photography

 

Find behind-the-scenes photos of the March 2015 cover shoot at the Beaumont Inn!