Still Miles to Go

While tutoring last week, we took a trip to the Museum of Science. While there, we spent quite a bit of time in the Theater of Electricity. T seemed so enthusiastic about the technology that I joked she could be an engineer when she grew up.
“No. I want to be something else.”
“Well, what do you want to do when you grow up?”
“I want to cure mitochondrial disease.”

I do, too.

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I thought I’d take the time to show you all what I’ve been up to these last few months, sans the ugly medical world.

In May, I joined the planning committee for the Inaugural Energy For Life Walk in Cambridge.  This event benefits the United Mitochondrial Disease Foundation, an organization for which I am the New England Chapter Treasurer.  For this event, I created the Wall of Hope which you can see on the tab above.  These posters lined the walk route and put a face to mitochondrial disease. Here’s the one I made for myself:

The even raised nearly $30,000 to go to the UMDF to “to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families.” It was an amazingly inspiring day full of energy, fun, and hope.
Because we are all worth a cure.

The walk energized me to become more active in the community. Therefore, soon after our move, I jumped in – head first and without looking back. The next big event was the Fourth of July festival and parade in Chelmsford, MA. First, my wonderful husband and our good friend Ralph – well, it was mostly Ralph… – spent a good week building the parade float.

It was incredibly successful and we had a great group riding on and walking with the float:


Throughout the event, my partner-in-crime, Stefani, and I got to meet some amazing people who pledged to help us:

And my amazing husband didn’t stop all weekend. He was instrumental in the UMDF reaching over 100 signatures for the current mito legislation.

Soon after the event, Stefani Bush and I packed up for an afternoon in Boston at Senator Brown’s office to speak with his aide, Brad. We spent about 90 minutes speaking about our experiences living with mito and about how the legislation would change mito research and the future of patients with mito. We consider it wildly successful.

About a week later, I tagged along with Stef to Children’s Hospital Boston to visit a friend in the hospital. Her name is Eithene. Eithene just turned 4 and has been living with mito her whole life, most of which is spent in patient. Sometimes, I get frustrated that I don’t have the money or energy to spare. But there’s something I do have to share: a smile. True helps spread those smiles and brings joy to endless hospital stays.

Finally, Keith and I volunteered to help out our friends with a recent blood drive for the Immune Deficiency Foundation. Many mito patients do rely on blood product. But even more close to home, two of my favorite little kids have primary immunodeficiency disease and rely on blood product weekly for survival. The event brought in 49 pints of blood which nearly hit the record of 50 pints/day!

My weight and medical issues (hypotension and anemia) don’t allow me to give blood, but Keith and Ralph did:

And that’s my life! It’s what keeps me going and what keeps a smile on my face. Because when I grow up, I want to cure mitochondrial disease.

Photos courtesy: Stefani Bush, Jessica Hilliard, and Charlie Anderson