An unbelievable day…

April 18, 2011 (Patriot’s Day) started off with waking up at 5 AM.  I met a couple of friends and dropped them off at the Boston Common en route to Hopkinton.  From there I drove around the corner and a mile down Commonwealth Ave to pick up Shane.  Shane is a Stiff Person Syndrome patient from Australia who reached out to us back in March hoping to find a guide to run the Boston Marathon with him.  

We headed off to Genzyme to meet the rest of the marathon team as we prepared to depart for Hopkinton.  I started off the meeting reading a wonderful email to the team from my patient partner Rebecca.   Though I will literally be running beside Shane, guiding him for 26.2 miles to Boston; Rebecca will be with me every step of the way in spirit as she has been since we met back in Feb, 2010.    Once in Hopkinton, thanks to the vehicular generocity of Kathleen, Mark, Tai, and Katy, we prepared for the start of the 2011 Boston Marathon. 

Not having run with Shane previously, I had to come prepared with a plan to ensure he would successfully navigate the challenging 26.2 miles of the Boston Marathon.  The energy from the volunteeers, the spectators and the runners was out of this world.  It’s this energy and the 6 mile stretch of down hill running that typically gets runners into trouble.  I had to keep telling Shane to slow down.   He kept saying “I feel like I have more” and I’d respond with “Great, you’ll need it later”.   

Throughout the run, I asked Shane to give me his RPE (rate of perceived exertion) as I wanted to ensure that his RPE was kept below 5 until we ascended the first hill.   We approached Wellesley College at 12.  Shane could not help but to move over to the right side of the road and high-five some of the screaming Wellesley students. 

It was music to my ears when Shane said “Is that it?” when we reached Newton-Wellesley Hospital; the top of the 1st hill.   We were averaging an unbelievable 9:28 min/mile through 16.  His RPE continued to rise as we took the right hand turn at the Fire Station.    Shortly thereafter we bumped into my great friend Nick who said “Shane, you are running a marathon where a new world record has been set”.  Nick ran with us for a couple of minutes giving us some great motivation for the last 7 miles.   Having just conquered hill number two, we were warmly greeted by the Genzyme/NORD team at mile 19 (Johnny Kelly statue).   We needed this inspiration for the start of hill number 3. 

Shane was now at an RPE of 7.  With 3 hills down, we battled Heartbreak Hill and started down to Boston College.  Shane was now at an 8 and I told him we can’t go any higher.  Shane took in the BC crowd and we moved on to the long stretch of Beacon St.  I typically find this to be the hardest part of the marathon and so did Shane.  He was really struggling as we approached mile 23.  I asked him if he wanted to walk for a few steps and he vehemently rejected the idea.  He was a man on a mission.   For the last two miles we counted strides in our heads.  I would yell 10 and he would yell 20 up to 100 and reset back to 10.  We did this for nearly 2.5 miles until we turned the corner on Boyleston St. 

With 1/4 mile left, Shane kicked it into high gear to the finish line.  He shattered his 5 hour goal and completed the 2011 Boston Marathon in 4 hours 17 minutes.   

We were greeted by Jacqui, another SPS patient who competed in the women’s wheel chair division and qualified for the 2012 Boston Marathon.   It was a fantastic day for SPS and rare disease awareness and a very special day for me.   A day I will never forget.  Thanks for a great day Rebecca, Shane and Jacqui.

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7 comments on “An unbelievable day…
  1. it is difficult to find words enough to thank team genzyme and my partner (i love saying that!) phil…

    here is a visual thank you
    while i begin to formulate the profound surging of love and support that is coursing through my veins.

    thank you for every step, each breath, all these months of believing!


  2. Tai Spargo says:

    It was so amazing watching all of you run by! NORD is so proud of all of you!

  3. Tanya Jarvis says:

    Well done to all the people who helped our Aussie Shane throughout this increadible Marathon 🙂

    And also to Shane…. wow….. well done, raising the awarness of SPS is hard enough, but what you are doing is inspirational !!! For all of us who cannot, you can.

  4. Liz Blows says:

    There must be a word to describe how grateful fellow sufferers feel, but I can’t think of a befitting one. So I will just say the loudest and warmest thank you. xx

  5. Carole Gagné says:

    I am pleased to see how much effort to our cause. How to organize an event of its kind in Quebec, to increase awareness of orphan diseases.
    Congratulations for your determination.

  6. Madolyn V says:

    WAY TO GO SHANE… I was following you on the tracker you did AWESOME!! Thank you to everyone who helped him accomplish this goal…. It does bring awareness to our disease (Stiff Persons Syndrome). I hope to be with you one day racing too. Just have to find a way to get a racing chair and someone to show me how to use it 🙂 I’m ready!!! You are all such an inspiration

  7. Shane James says:

    Thanks so much to everyone who has supported me; it`s hard to find the words an unbelievable experience I will never forget. Thanks again Phil, and the Genzyme/NORD team running for rare diseases. Alone we are rare; Together we are strong.

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