5 minute read
ONE TOUGH MOTHER
A FAMILY AFFAIR
Raising Duchenne Awareness and changing the Duchenne Landscape for the younger generation is a family affair.
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This month I like to introduce the Rochester Woman Online community to my daughter Kathryn Piacentino; her platform to raise awareness for Duchenne Muscular Dystrophy is through Marathon running under The Race to End Duchenne Program with Parent Project Muscular Dystrophy (PPMD). I often wonder how on earth did my daughter become a marathon runner? Running is not something I enjoy at all! I found running extremely painful and got no joy or satisfaction from it. However, my 32-yearold daughter truly enjoys it. I had a chance to interview her about her efforts.
What made you get into Marathon running?
My brother, Jonathan, was diagnosed with Duchenne Muscular Dystrophy, and throughout my life, my family has supported Parent Project Muscular Dystrophy in various ways. As my brother and I got older, it became more apparent how differently we lived. When we were both in our 20s, I noticed his physical ability and mobility declining. He could no longer lift his hand/arm to eat an apple without the help of the table, he was using a powerchair more frequently, and he was no
BY CHRISTINE PIACENTINO
longer standing without assistance. I looked at myself, a healthy, fully able individual, and asked, “what are you doing? your body, health, and life are a gift… embrace it.” I wanted to do something to get more involved and raise awareness. I wasn’t sure what to do or how to do it; I just knew I wanted to be a part of making a difference. I was living in Cincinnati, OH, which is home to a huge running community, and I
knew PPMD had The Race To End Duchenne team, an opportunity to get involved by participating in runs/ races, so I signed up!
You and your brother live very different lives; what’s the one barrier you have witnessed preventing people like your brother from experiencing everything they can out of life?
Accessibility. The world isn’t accessible, which is frustrating because there are so many extra steps that need to be taken, factors to consider, and significant monetary expenses to be able to do the same things as someone else. Whether traveling to a new city or going to trivia in your hometown, you must explore and plan for all possibilities.
Unfortunately, “handicap accessible” is not a universally inclusive term for the accessibility of all wheelchair users. It’s not just about getting through the front door; it’s the whole experience. But, just like anyone else, we as people can be our own barriers at times. If you know what you want, there is a way to get it and have the life you want. If something is challenging, complicated, or a path is unpaved, although it might not be easy, it’s not impossible.
The key word is “can”; people want different things, and I’ve learned that. I used to think my brother should be able to do everything I was able to do, but only recently I realized that he doesn’t want to do all the same things as I do. We have different interests because we’re other people. His attitude and perspective are different from mine. I think that if there is something you want to do, you can, will it be easy? Maybe not, but if the world hasn’t set you up yet,
you can change it; you can create a new path for yourself and others to help change the future landscape. There’s this belief at times that “I can’t do that” or “it’s not realistic” I’d love to see more people embrace a mindset of “it’s an opportunity” and empower each other to “figure out how to find a way” for change that could be so beneficial.
What’s your inspiration to keep running?
Running improves cardiovascular health, reduces stress, and strengthens lung capacity. Duchenne muscular dystrophy affects all muscles, the leading causes of death are a cardiac or pulmonary failure, and there is no cure yet. I keep running to raise awareness because your heart is a muscle too, and I want to keep my brother and all those with Duchenne beating longer.
As you run, what are you feeling and thinking about?
How unique an experience I am witnessing, how lucky I’m here, why I’m on the course, and my journey. I am soaking in everything, absolutely everything. It is 26.2 miles of pep talks and reflection. I go through just about every emotion and feeling imaginable, and sometimes, I have some great ideas :)
What was the first Marathon you ran?
My first full Marathon was the Chicago Marathon in 2018; trust me, I felt every step of the 26.2 miles. I wondered if I would ever finish. I wanted to quit; it was rainy, my stomach was in knots, and I questioned
everything about how I trained. I was so glad when I crossed the finish line and burst into tears. I wasn’t sure if I wanted to run another marathon, but conveniently I had also registered for the 2018 New York City Marathon. A short month later, I would be taking on the challenge again.
How many Marathons have you run overall?
The upcoming 2022 TCS New York City Marathon on Sunday, November 6th, will be lucky number seven! It will be my fourth time running The New York City Marathon. It is one of the world’s most significant and inspirational race events, attracting people from various countries, backgrounds, abilities, and journeys. People come together to all share the same course but have different experiences and stories.
What keeps you going back to NYC?
I love this race because the energy and magic of the city during race weekend are beyond compare. There is so much love and support throughout the city; it comes alive beautifully. You connect with everyone you meet, sharing stories with other runners and the support from spectators; it’s an instant bond and reinforces why I run. New York City and the race is full of tradition, nostalgia, and history; there’s so much pride and respect for the event, and it’s one of my absolute favorite experiences. If you would like to help support my awareness efforts to End Duchenne and make a donation, please scan the ‘Race to End Duchenne’ QR code.
