Why did I subject myself to the torment of a half marathon along the unforgiving pavement of Lake Shore Drive? Especially since my physique now has a bit of insulation around it to protect me from the harsh Chicago winter? I’m running for Julian, and I’m running for Maya.
Maya, my older sister who many of you know from her work on the Marfan Foundation board, has Marfan syndrome, along with her youngest son. They’re both fighters: Julian, with his positive attitude and energy that can’t be suppressed (even when you’re, for example, trying to get him to stop yelling POOP in church), and Maya with her tireless advocacy. She’s dedicated so much of her time to educating and empowering those impacted by Marfan, and making sure that doctors and research hospitals have the resources they need in order to continue cutting edge research to help manage, and aid those with the disorder.
They’re doing all they can, from supporting others emotionally, to raising money, to improving awareness, and building critical social support networks. They only thing they can’t do is run.
And quite frankly, that’s the least I can do.
Medically, I suppose you’d say I’m non-affected, but really, anybody who loves somebody with Marfan is affected. I was affected when I couldn’t understand why my sister couldn’t play basketball with me, or when we spent our weekends at the doctor’s office, or when we are always worrying in the back of our minds about their health. I want to help make them safer and happier, and if sweating and grunting in the hot sun for 13.1 miles helps, then I’m happy to do it.
Matt Brown is part of The Marfan Foundation’s Team Victory, whose members participate in marathons, half marathons, and other endurance events around the country. Want to get involved on behalf of someone you love who has Marfan syndrome or a related disorder?