Musings of a Marfan Mom

My Life With Marfan, Part 3

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Other installments in this series are Part 1, Part 2, and Part 4

I had decided that my mission was to make sure 1) everyone knew about Marfan and 2) people with Marfan knew how to advocate for themselves, especially in emergency situations, so that no one would die of aortic dissections anymore. Impossible goal? Yes. But, I’m only going to stop trying to reach it when I’m dead.

Before I could go about educating anyone else, I realized I needed to educate myself and change my poor attitude. I sent away for materials from the NMF and started researching. In the first year after S.’s death, I wrote an article for the local on Marfan syndrome as a guest columnist and gave a couple of presentations at school to students and staff at my school.

When it came time for my 8th grade graduation present, my mom offered to take me to NYC or to the National Marfan Foundation’s conference in Pittsburgh. The choice was a no-brainer.

Most of my peers plastered their walls with pictures of *N Sync, Leonardo di Caprio, and whoever the other hot celebrities of the moment were. Not me. Every morning I woke up to a big poster of the NMF’s Board of Directors/Professional Advisory Board members. They were my idols. When Mom and I arrived at conference, I felt like I was one of those “nobody” guests at the Academy Awards, watching all the famous people walk the red carpet. “OhmigoshMom LOOK it’s JULIE KURNITZ!!! And she’s talking with CAROLYN LEVERING. Do you even KNOW who they are?!?!

Vincent Schiavelli ran the teen programming back then. At first I was really nervous about participating. I told Vincent I didn’t feel well and that I’d skip the art exhibit trip that first night. He said he would get a taxi for him and me so I didn’t need to walk. Still, I turned him down. Someday, when I’m on my deathbed, if I get asked “Maya, do you have any regrets?” I will say “Only one. I SHOULD HAVE TAKEN THAT TAXI RIDE WITH VINCENT SCHIAVELLI darn it!” Seriously folks, that man was awesome and a gift to the teen program. He was both serious and irreverent and pushed us to view ourselves as capable. Any time I see him in Tomorrow Never Dies I smile.

I don’t think I can ever articulate what the first conference meant to me. It was a lifesaver for sure. It was freeing to be surrounded by12 other kids who understood what it was like to not be able to participate in gym, to have pain, or fear, or heart palpitations. No one questioned me when I said I couldn’t drink pop. It was just…comfortable.

There were two highlights to my weekend. Our friend Barb had traveled to conference with Mom and me, and she was very well connected in the Marfan community. First, she introduced me to Libby Sparks. Libby was a nurse practitioner working under my cardiologist, and they were starting a Marfan clinic. After conference, I switched my care over to Libby, and that might have been the best medical decision I ever made. Throughout the past 10 years she has watched out for me, cheered me on in life, and basically become a part of our family.

The second highlight was dinner with Julie Kurnitz. Barb knew Julie and arranged for a big group dinner at the hotel restaurant. I cannot tell you what we talked about; all I remember is thinking that I was the luckiest girl in the world that someone like Julie would pay attention to me. She even invited my mother and me to a party in her hotel room later that evening! Carolyn Levering (the NMF’s CEO) was there, along with some other “bigwigs.” Mom was really embarrassed that I had dragged her along (she didn’t think the invitation was real) and we didn’t stay a long time, but I will always be grateful to Julie for making me feel so special and important.

I left that conference with an increased sense of self-worth and an even more fervent desire to spread awareness about Marfan syndrome.


The 1999 conference group: 13 Marfan teens + 2 unaffected siblings


The lovely ladies

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One Comment

  1. I'm sitting here weeping. I'm Julie's sister, and tomorrow is the 5th anniversary of her death. She meant so much to so many people, and it is thrilling to read your story. Thank you.
    Lyz Kurnitz-Thurlow

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