Musings of a Marfan Mom

Heartworks Gala 2012: Reflections


Thursday night I had the opportunity to attend the National Marfan Foundation’s Heartworks gala. For those of you who don’t know, it’s a fun evening to raise money for the NMF, complete with dinner, silent and live auctions, and entertainment.

It was a great excuse to buy a new outfit! My fellow Marfan Mom friend Samantha served as virtual fashion consultant for me. She’s the best!

The food was delicious, but the program was amazing. The grandmother of Andrea, one of the teens I work with, was being honored. Andrea spoke on her behalf, discussing how NMF programming has changed her life. I started to tear up. She was so poised standing there, speaking to hundreds of people. I couldn’t help but think about my experience at conference at about her age, and how much the teen program has grown since then. That led me to think about Baby J, and how I hope that he is as self-confident as Andrea is when he is a teenager.

After Andrea, my friend Suzanne spoke. I had to keep running my finger under my eye to prevent the tears from spilling over! Suzanne talked about the loneliness she felt while trying to figure out what was going on with her son, and then how they’ve found a home in the NMF after his diagnosis and created this new sort of normal, even when that new normal brings some heartache too. I know I wasn’t the only one who could relate to what she was saying.

It was just so electric, being in that room. Hundreds of people gathered together with the common purpose of raising money to benefit those of us living with Marfan syndrome. It’s not something I will forget.

I don’t know what the future holds for me or my son, but thanks to the NMF I know that we HAVE a future and it will be beautiful. Baby J will have moments of difficulty, I’m sure, but they will not define him and at the end of the day, he’ll have the Marfamily to lean on. For that, I am forever grateful.

Heartworks Gala 2012

Andrea and me

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  1. Beautifully written – as always. Glad you had a great weekend.


  2. You’re the best! And it was certainly a great night!


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