Jessi’s run, Ben’s Dream; our Day – MPS Awareness

Jenn n IJenn n I 3

I first met the Siedman Family in May 2007, while in MA for a MPS I patient panel at Genzyme. After the MPS I Awareness day events in 2007 I, went and stayed with Jenn and her family for a day or two. Like me, Jenn’s son also has MPS, though Ben had type III-Sanfilippo whereas I have type I (Hurler-Scheie form). Over the years we’ve seen each other at some conferences or while I was in MA for other MPS related things.

In the MPS community, Jenn and Stuart are known for their direct and amazing involvement in Sanfilippo research through their own family foundation, Ben’s Dream, and for their dedicated support of families going through similar situations as they have with their own son Ben.

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When I had first met Ben some 7 years ago, he was a  kiddo for whom the effects of Sanfilippo had clearly impacted his life but he was still able to do some of the things a kiddo his age would be able to do. Last I saw Ben, a year ago this April at the 2013 Boston Marathon weekend, he was much more affected by the MPS and fully reliant on Jenn and Stuart for his care. Sadly this past winter Ben developed pneumonia, an always potentially deadly infection for any MPS patient, and passed away with his family by his side. I can’t imagine the loss the Siedman family feels without Ben to help and care for every day; I can’t imagine the empty feeling they all must feel in their hearts, and yet I am continually surprised by just how dedicated Jenn and Stuart have remained to our MPS community. Not only have they traveled to MPS III meetings but they continually offer support to other families dealing with similar crises or even newly diagnosed families which I know must be incredibly hard though I wonder is it equally rewarding?

Jenn n I 2

The first thing that comes to mind when I think of the Siedman family but especially Ben is his love for what the family calls ‘crazy socks.’ Whenever I am in-patient, I wear any of the multiple pairs of “crazy socks” I have (coined by a friend of mine as “hospital socks”), and I continually smile thinking of Ben. Without having experienced a loss as great as the Siedmans, I personally believe that even though the earthly loss of Ben is so great, the heavenly gain to him is even better. A body free of pain and suffering, a spirit to spread around laughter and happiness, and I can’t help but picture Ben surrounded by his beloved animals, and especially always cows or related farm animals! These are thoughts of Ben which I pray also help Jenn and Stuart during very difficult times and I always hope Jenn, Stuart, Noah and Izzy have some comfort like this to help them through each new day and each new hurdle faced without their Ben. I feel truly blessed to know this family and to have shared our MPS journey together; Ben and I may have had 2 completely different forms of MPS but this disorder truly does create some amazing friendships — even though it might seem like the unlikeliest of friendships given our distance, our different treatment paths, and our different outcomes.

 

 

In attending this year’s 2014 Boston Marathon I will be staying with the Siedmans again.  While participating in the Running for Rare Diseases activities with Jessi Colund, my Genzyme running partner, I will also be thinking of Patrick Cutter, who will also be running the marathon and raising money for Ben’s Dream; Patrick is the cousin of the Vanderpool’s, another Sanfilipo family. Together we will all be celebrating Ben’s spirit and the inspiration so many of us living  with MPS have given to work for greater awareness of rare diseases. I am looking forward  to being on the sidelines, cheering for those like Jessi and Patrick who run such far distances on our behalf and for Ben, whose memory lives on with each step they take.

I can’t thank Jessi enough for running this Marathon for a 2nd year on my behalf, for the friendship we’ve formed and for the hours  I know she must spend pounding the pavement in order to raise better awareness of not only my disorder (MPS) but rare diseases in general!

Thank you to the Running for Rare Diseases Team!

Erica

MPS I Adult, www.rarelydefined.blogspot.com

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5 comments on “Jessi’s run, Ben’s Dream; our Day – MPS Awareness
  1. phil says:

    Jenn and Stuart, I am saddened to hear of Ben’s passing. Please know that he will be in our hearts and minds. Erica, thank you for such a warm and thoughtful post. Can’t wait to see you all in two weeks.

  2. Jessi says:

    Erica, this post is great! Thanks so much for writing it. It’s really meaningful to me that our partnership has “expanded” to include the Siedmans as well. Thanks for sharing more about their story and what they’ve meant to you. Perhaps I can find some crazy socks to wear in the marathon? :-) Can’t wait to see you soon!

  3. Erica Thiel says:

    Thank you Jessi and Phil!
    The Marathon is my inspiration to slog through what has seemed like very endless days of in-patient ‘boring-ness’; even my Neurosurgeon asks every few days “how long is it till the Boston Marathon?” as she wants to make sure I am out of the hospital and feeling well enough to be there – I can’t even tell you how much I am looking fwd to coming!
    Thanks so much for your kind words!!
    Erica
    http://www.rarelydefined.blogspot.com

  4. Emma Rooney says:

    Cheering for you Erica! It sounds like you don’t get to taper before Marathon Monday! I can only imagine it will mean so much to Jessi to have you there cheering.
    Sending you healing good vibes from Germany. Keep strong.

    P.S. I hope others are plugging into your blog too.

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