Musings of a Marfan Mom

February is Have a Heart Month, also known as Marfan Awareness Month. To celebrate, I’m asking readers to submit their diagnosis, birth/adoption/surrogacy, or celebration of life stories. Andi, president and co-founder of Jonnie’s GoodGuys, Inc. is sharing the story of Jon and how this charity began. I became aware of them through social media and am grateful for how much fundraising they do for our community. Thanks for sharing Jon’s story with us, Andi!

I do not have Marfan. I suspected someone did and I didn’t say anything. Jon was 33 when he collapsed of an aortic dissection on November 13, 2005. In his late teens he got the nickname Blades, because his shoulders would touch when he did push-ups. Throughout his young adult life he was active, played recreational basketball and was a member of the Star of Indiana Drum and Bugle Corps for 4 years. A study by Indiana University Kinesiology Department showed that performing a drum corp show was the equivalent of running a marathon to your body’s heart and lungs, yet he never had a problem. It was at his funeral that I asked his widow, and now single mother to their then 5 month old daughter, “do you know if Jon had Marfan? (hindsight, not the best time to ask)

Jon even ran, which is one of the activities they say should be avoided for people with Marfan. He wasn’t going to win any gold medals, but he ran. He ran our local mecca of all race events, the Indianapolis One America Mini Marathon, held the first weekend of May. It is there that he proposed to his beloved Amy, so it is there that our story really begins. See, Jon and Amy were already registered to run the event in 2006. We didn’t want her to run alone so a group of us began to train. We dubbed ourselves Jonnie’s GoodGuys. “GoodGuys” after one of his favorite college t-shirts that said GoodGuys, family is everything. We were indeed a family.

That race got us hooked: we, some reluctantly, became runners. We sought out the support from the National Marfan Foundation where they seemed confused at first, saying, “people with Marfan shouldn’t be running marathons!” “No, we want to run and get people to donate money to you,” I explained. And so began our relationship with the NMF. From 2006 to 2012 we raised almost $5,000 for the foundation. Then we got an email from Cathy T (the NMF’s Director of Annual Initiatives & Donor Relations) with the amazing news that the National Marfan Foundation would be an official charity of the 2012 Marine Corps Marathon. We packed up a van of 7 runners from 3 states and drove from Indiana to Washington DC. 2 ran the full marathon and 5 ran the 10K. What makes this even more momentous is that one of our runners (my husband) had just suffered a massive heart attack 3 months prior. We were humbled by the greetings we received from the Marfan community. Holy cow, people knew who Jonnie’s GoodGuys were? Thank you Facebook and Twitter!!

In 2013 we will officially become a non-profit public charity to raise awareness and funds for aortic heath issues. We will continue to participate in the Indianapolis Mini Marathon every May and we will make that trek to Washington DC each fall, though hoping to avoid driving back in a hurricane. So, did Jon have Marfan? His autopsy wasn’t 100% conclusive, but he had 4 of the defined characteristics, enough for his closest family and friends to say, “close enough” to educate. 2 of his 4 siblings have since had aortic repairs. So there is a connection. It is not unheard of for one of us to walk up to a total stranger and say have you ever heard of Marfan syndrome? Had I done that a little earlier in Jon’s life who knows what would have been, so I have to make every moment an opportunity.

There’s so much more to us that I would love to share, including our trip to Disney to run 39.3 miles in a weekend, our co-founder running 9 marathons and a 44 mile heart around the city of Indianapolis in one year, our upcoming virtual race and how your followers can support our efforts, but don’t want to take up anymore space! Thanks for giving me the opportunity to share! #DoGoodStuff

You can find us on Facebook, Twitter, or jonniesgoodguys.org.