Tuesday, April 16, 2013

The infamous Boston Marathon

Thank you for all the messages and thoughts on my fb page and text messages or calls, I am amazed and completely appreciative of how much all of you, my friends and family cared if I was ok and that I was home safe from Boston!

I'll post some pics here from the various events Sat night (Marathon dinner at Genzyme-Allston w our Marathon runners and a few other Genzyme employees), Jess and I doing Boston sunday afternoon and breakfast at Allston monday pre-marathon + a bunch of us from Genzyme cheering on the runners at the Genzyme station in Wellesley on race day. Very fun! Too bad such a sad end to the day. =/ I am so grateful I chose in the end not to go down to the VIP seating area at the Boston Marathon Finish line as our seating area was directly across from the finish line, Jess and I in fact went down there the night before and took pictures.  It was very nice seeing my friend Jenn Siedman and her family again, I had stayed w them a few years ago and all of her kids have grown up so much! Ben, her son has Sanfilippo another form of MPS (type III) and I admit I wish I knew better how to help Jenn and her husband Stuart (super nice guy too!), Ben was alot less far along in the disease progress last I had saw them (other than running in to Jenn last summer at our National MPS Society Conf/Gene Spotlight meeting in Boston but I hadnt seen Ben then.) and Sanfilippo is just such a very different disorder than is MPS I, my disorder. I wish there was a treatment for these kids, they deserve something, they (and their parents) go through so much and to make it 10times worse the Sanfilippo kids/teens often cannot talk and it is a guessing game for their parents/care-givers. I am incredibly thankful to have friends like Jenn and her family though who get it, who get MPS and who I can/could talk to and was just normal conversation but we both completely got what the other was saying. Our frustrations where the same essentially, our feelings where alot the same.

I flew home monday evening well after Jess had finished, she finished the race ahead of the 2 bomb blasts by about an hour and was well out of the area already and some of the other marathon runners  where also already finished and several others where around mile markers 24-25 I believe and did not get to finish. Such a sad, incredibly sad end to a great day. My prayers go out to all those affected directly.
                                                 Jess and I, Marathon morning (Breakfast, Allston)
                                            Jess's shirt - 'suffering, perseverance, character, Hope'
                                              At the Genzyme hang-out, Wylder's Warrior's paint (Neiman Pick kiddo)
                                            Izzy, Jenn and I
                                                 Loved (!) this banner
                                            Will be forever grateful I didnt use this, seating directly across from blasts
                                      This is exactly where the blasts happened, pic taken the night before
                                        Jess and I, the night before at the infamous finish line, 'Team MPS' shirts

Thanks Jess for running on my behalf, for raising awareness of MPS and for raising funds for NORD!

Thank you Jenn for having me for the weekend, I had a really great time with both of you ladies!
Thanks for stopping by,

1 comment:

  1. Erica

    Wonderfully written blog. You captured both the excitement of your trip and the sadness of the days end. It was great to spend time with you. You are an inspiration and I welcomed the time to be with someone who understands. I also want to say thanks to the Genzyme team for welcoming me in their ranks and sharing the day. It was great to meet Jess.