Musings of a Marfan Mom

My Life with Marfan, Part 1

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I’m not quite sure where my story starts, but I suppose the Coolest Thing to Ever Happen to an 8 Year Old is as good a place as any.

Ever since my parents first used me to get them free candy, I’ve wanted to be in a parade. I used to beg my dad to paint his ugly pickup truck magenta and hang streamers from the ladder racks and let me ride in the back, tossing candy to the other kids. (My mother is eternally grateful that the year Dad offered to indulge me in this fantasy, he missed the deadline to register his truck by a couple of days.)

Finally, when I was 8, I was set to increase my cool factor by 110% by riding on the Girl Scout float in the Pataskala Street Fair parade. It was a hot day and all of us Brownies had to wait a while for the start of the festivities. I don’t remember much of what happened, but at one point I woke up in the gravel next to an ambulance (how convenient!). I didn’t know it then, but it was the first of many fainting spells. Someone fetched my mother and soon I was riding home in Dad’s ugly pickup, instead of standing atop the Girl Scout float in all my 8 year old glory.

Shortly thereafter, Mom took me to my pediatrician’s to find out why I had fainted. In retrospect, I wonder why she didn’t just chalk it up to the heat and me locking my knees and leave well enough alone. But she didn’t, and my doctor knew my family well enough to know to take mom seriously. He looked through my chart for a while, bustled around taking some measurements, and said “I’m sorry, I really should have caught this earlier.” And then he told my mom about Marfan.

The doctors at Childrens’ Hospital confirmed the diagnosis, which sent my family into a tailspin. I understood that Abraham Lincoln had had the same illness, which I thought was pretty awesome. I wanted to tell everyone at school. I mean, having the same illness as a dead president had to make me famous by association, right? However, Mom suggested that my diagnosis might be something better kept a secret.

For the next 4 or 5 years, I just sort of existed in this awkward place where I didn’t really understand what Marfan meant, and neither did my parents. They meant well, but were at times suffocatingly overprotective, and I began to rebel. Mom finally suggested I write a letter to my doctor and ask if he had any other patients with Marfan that I could talk with.

That letter changed my life.


My first (and last) equestrian competition, taken about a month after I was diagnosed with Marfan

You can read the rest of my story here: Part 2, Part 3, and Part 4

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6 Comments

  1. I am excited that you are sharing your story, Maya!! I've always been interested, especially since I fell in love with the musical RENT when I was in high school and I'm sure you have heard Jonathan Larson's story. You are an amazing person – you really inspire me!!

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  2. Thanks! And yah, Jonathan Larson's family has done so much for us. The NMF got a PSA on the RENT dvd that came out a couple of years ago. We'll never know for sure if Jonathan had Marfan, but it's very likely, and we're grateful for everything the Larson family does to turn their son's sad story into help for so many people :-)

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  3. I was reading and your story just ended, and I was like, "what? what happened? Why did the letter change her life?!" And I never knew Abe Lincoln had Marfan, either. Thank you for sharing your story, and I hope you share more.

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  4. Well, we're not 100% sure that Lincoln had Marfan because they won't allow his blood to be tested, but he certainly looks Marfanoid. Some other famous Marfs:
    – Charles de Gaul
    – Mary Queen of Scotts
    – Paganini
    – Rachmaninoff
    – OSAMA BIN LADEN
    – King Tut's father

    And yah, I'll write more…I think there will be 4 parts. :-)

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  5. I want the rest of the story!!!! Thank you for sharing something so personal. I know it helps me to hear what other people are going through and overcoming. You are awesome chica!!

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  6. I’m unfamiliar with Marfan and am interested in learning more through your experiences. Thank you for sharing with us.

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