How would you feel if you were diagnosed with a muscle disease? If you found out simple every day things like running and walking might require a lot of effort someday. How would you feel if you couldn't have biological children easily? If a baby you fostered for 9 months as your own was taken away from you? For my sister and I, these are not hypothetical questions since we've been diagnosed with Myotonic Dystrophy.
You'd never guess there was anything "wrong" with us. We don't show many physical symptoms. I only found out about my condition when considering becoming an egg donor for my sister, Christine, after she was diagnosed. I didn't prepare myself for the diagnosis at all, I just assumed I was fine. It came as a total shock.
I don't know what the future holds. At the time I was diagnosed, I didn't have any symptoms. Now, 5 years later, if I do something that requires a lot of effort like opening a stubborn jar, my hand freezes. Every time my hand freezes my mind starts wandering. I worry about what I'm going to be like in 10/20 years. How am I going to have kids without passing it on? The thought of not being able to run someday scares the shit out of me. But I can't focus on the "what ifs" since it affects everyone differently, even people in the same family.
Instead of worrying my life away, I decided to do something about it. Shortly after I was diagnosed, I started doing all the cliche things on my bucket list. My motto was "Why wait". I went on an unforgettable trip to Italy, went skydiving, and ran my first half marathon. I loved it so much (crazy I know) I ran my first full marathon 3 weeks later.
I then started a mission to run a race with a charity that would benefit my disease. What better race than Boston? That's when I discovered Team Momentum. Although I had just missed the cutoff date for Boston applications, Chris assured me there would be another time and persuaded me to sign up for Chicago instead. I then rallied a team to run with me. My sister, brother-in-law, best friend, and cousin. Together, we raised over $16,000 for the MDA. The marathon was a blast, and to say the least, I was hooked.
I immediately signed up for my next race with Team Momentum, the NYC Marathon, the following year. Shortly after, I thought, "I could fundraise for a living" and became a Fundraising Coordinator for the MDA of Massachusetts and moved to Boston. I didn't stop there. After meeting my now fiance, I persuaded him to run his longest race ever, the Boston Run to Remember Half Marathon with me, again fundraising with Team Momentum.
Although I switched my career back to one in fashion, I kept running with the ultimate dream of running the Boston Marathon someday. Last year, I ran my fourth marathon, and I was heartbroken when I didn't meet my goal of qualifying. But now the time has finally come. Chris was right, he would get me running Boston someday! I am absolutely thrilled to join Team Momentum again, finally on the Boston Marathon Team. An absolute dream come true.
The support I've received from family and friends over these 5 years is overwhelming. It means the world to me and I am so incredibly thankful. Now I need everyones support more than ever as I face my highest fundraising challenge yet. Every dollar makes a difference. If you can't make a donation, please help me accomplish my mission to raise awareness- next time someone says "Look there's that crazy girl that runs all the time" say "Yeah it's because some day she might not be able to".