My Run 4 Boston

I never made it to Boston but on Marathon Monday I ran for Boston in my own unofficial way from Germany. My weekend was spent studying the Boston Marathon course through reading Jessi’s recommended, “26.2 Miles to Boston: A Journey into the Heart of the Boston” by Michael Connelly. I chose my local route carefully to take in a comparable number of hills (hopefully without heartbreak). After receiving Andrew’s tweet and our quick Skype chat, I made sure my own green laces for Gaucher disease were tied tight, switched my GPS watch from kilometers to miles and got ready to set-off on my run. tweet

green laces heading outBefore getting out the door, I attempted to imagine those inspirational words Phil would surely have shared with the team on their bus ride to the start. I’m not sure what words were actually spoken but sensing Phil’s spirit and a bit of imagination, I felt pumped and ready to run! On the run I also had a chance to listen to two moving podcasts.  First was an interview with Jacqueline Hansen, the 1973 winner of the Boston Marathon and powerful advocate for the inclusion of women in marathons. This was followed by a lively account from the British trio who founded the “One Run For Boston” relay across the United States.

My marathon progress may have been slow as I missed being pulled along by the crowds and was definitely lacking water as I made it to mile 14 but I also knew the exact time that Andrew was joining me and I never felt alone knowing “we run together”. As I put one foot ahead of the other, I had a chance to reflect on what it means to me to be a runner with a rare disease. The possibility of being able to run did not come simply by chance or my own desire and willpower but rather a much more complicated combination of scientific research, lucky timing (being able to start inspiring listeningtreatment for Gaucher disease at age 13 before irreversible damage to my body), on-going access to world-class healthcare, as well as having the real privilege of time to train my love of running & of course, the love and support of all the people that care for me. It was this combined force that led me to be on this run, at the very same time as my running partner, Andrew Scholte, was running for me!

On Monday I managed to make it home before dark and just in time to track live Andrew’s race to the finish. I felt extremely emotional when I knew for certain that Andrew had crossed that line this time! We had been running together for many months for exactly this shared moment. I hope one day I might train enough to qualify to run in Boston but nothing will ever take away from my first Boston Marathon. Thank you Andrew and the whole 2014 Genzyme Boston Marathon Team for sharing your Boston Marathon.

I have walked that long road to freedom. I have tried not to falter; I have made missteps along the way. But I have discovered the secret that after climbing a great hill, one only finds that there are many more hills to climb.
-Nelson Mandela, “Long Walk to Freedom”

Posted in Patient Stories
4 comments on “My Run 4 Boston
  1. Jessicac says:

    You two really lived out the spirit of #WeRunTogether; I am inspired!

  2. Beth S says:

    You are amazing, Emma! Boston was hard enough for me even with the cheering crowds and the medal at the end. I can’t imagine running that far by myself. Fortunately you were not alone, you had Andrew and all of the rest of us with you in spirit. Excellent job and very inspirational!

  3. andrews says:

    Emma, I was so excited to be running with you this year at the Boston Marathon. It really kept me focused on the goal “alone we are rare, together we are strong”. I can’t wait to run with you in June during your next race!

  4. tim and moira rooney says:

    Dear Emma
    Parents are supposed to be an inspiration to their kids
    Role reversal – you have always been an inspiration to us !
    Congratulations to both you & Andrew
    Lots of love
    Mum and Dad

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