Still Miles to Go

Even though mito sucks, I have seen enormous strength in people who refuse to give up, people who follow their dreams despite – even in spite – of mito.

Just over two weeks ago saw the album release of my dear friend Stefani. The culmination of five years of her hard work and four months of my own. It was a huge success. We sold around 100 CDs and raised over $200 for UMDF and IDF through donations alone (she also donates a portion of each CD sold to the aforementioned charitable foundations).

The day after, we heard from a mutual friend. Her 10-year-old daughter Emma also has mito. While listening to the album, Emma found out that Stefani had mito, too. Her response? “Oh wow, now that means that I can follow my dreams too.”

That comment really resonated with me. Mitochondrial disease is one of limitations. Limited mobility, sight, hearing, mental functions, energy, and the list goes on. We’re constantly told you can’t. Sometimes we can get so caught up in the can’ts that we forget about the cans. There’s so much that someone with mitochondrial disease can do.

Stef is just one example. Not only am I inspired by her, but I also look to others living life with a degenerative and deadly disorder. My friend Janelle is writing her PhD dissertation on Huntington’s Disease at the University of Illinois. Colbie dances when she’s not at school. Elisabeth Tova Bailey and Mattie Stepanek wrote books. And Crystal – mom-extraordinaire – has opened a shop on Etsy where you can buy her designs for children and infants. I also have numerous friends pursuing their goals at universities across the country – from MIT and NYU to Washington University at St. Louis.

We Mitovians are a resilient folk. Yes, we may do things differently than others, but we are not ready to simply let our dreams go.

Me at Stefani's Release Party