The Start Before the Start……

So it begins the start before the start of the 2014 Boston Marathon.  It is an honor to be part of the Genzyme Boston Marathon Team, an honor to run on behalf of this organization, all the patient partners, and for the national organization of rare diseases in support of a life-saving/life-changing cause.

To many this might sound odd, to those that know me it makes sense.  It’s not the training that’s the tough part, it’s not the running that terrifies me, it’s not the “self-doubt” of breaking through that wall to complete 26.2, it’s not that timer stress of setting that “PR”, as this marathon has absolutely nothing to do with a PR, it’s not the fundraising (looking forward to Karaoke night!), no, no, no….it’s bigger than that, bigger than you and bigger than me…

It’s the emotion, the emotion of human connection, of patient partner connection, of community connection, of connecting with a community of so many that you thought was once so small, so rare and now from this tremendous growth of emotional connection has transformed the community, has transformed YOU.

Meet my buddy Elijah and his awesome sister Sophia, amazing mother Melissa and loving Father David.

eli

http://prayforeli.blogspot.com/

Elijah has Rothmund- Thomson syndrome (RTS).   People with RTS have an increased risk of developing cancer, particularly a form of bone cancer called osteosarcoma.  Eli was born with bones missing in his hands and thumbs.  He had his first surgery at one month old to insert a feeding tube in his tummy and is fed through a syringe in his stomach daily by mom Melissa.   At nine months old he had his soft palate cleft repaired and at 13 months he had surgery to open one prematurely fused suture in his skull and reconstruct his forehead. At 3-years-old he had his feet removed so that one day he can walk using prosthetics. Elijah has had more medical intervention than many late in life.

We met for the first time via a video conference call the other day from my apartment; Elijah is one very happy, outgoing child.  He has a personality that will light up a room.  The Ramirez family is an amazing family, who truly understands the meaning of life, their love for life radiates through, and it’s contagious!

During our video conference, Mr. Elijah of course requested a tour of my apartment.  I told him this is an unannounced visit and I’m not very organized at the moment, however, for you Elijah yes 😉

Eli_is_five

Mr. Elijah Ramirez and Family received the VIP treatment, a tour of my ridiculously small, disorganized, slightly embarrassing studio apartment.  Which I had to point out to him very few have seen; he’s one lucky 7 year-old!  (His parents laughed).  As I carried my laptop around the room he asked about family photos, my empty fridge as grocery shopping is much-needed; we even had a glimpse of the outside, east coast SNOW!

It was only fair he reciprocates he said.  As Eli and his sister Sophia gave me a tour of each of their rooms, I learned how much energy the Ramirez kids have and loved every minute of it, Sophia is an amazing artist and Elijah LOVES trains.

Dad David pointed out Sophia’s lights hanging from her bedroom ceiling which involved a 6ft ladder and a couple of hours on a Saturday.  I communicated “Ya, know Sophia, you could just use laundry detergent to draw on your walls, it glows in the dark once dry, so you’ll have art work and lights all in one, Tide detergent works the best!” 😉 Her eyes immediately lit up as she turns to Dad David, David and I both had a good laugh about it.  I reassured him I LOVED it as a kid, like that really mattered, it’s their walls!  I then communicated my professional Boston Marathon running wardrobe is in your hands kiddos! As long as I have the GZ shirt on the rest is fair game for Elijah and Sophia.  Sophia immediately pulled out this hot pink Mohawk wig she had lying around her bedroom floor, perfect I yelled, love it!  We made a note of the Mohawk…..

Back to the emotions, connections, awareness, if the Ramirez’s journey doesn’t touch you who knows what will.  It’s the connection and the want to do more, this experience has tugged on me personally in a much deeper way than any miles could have, life is different.  The more social media I’ve posted to, more home town friends have re-connected with me, to unfortunately reveal they themselves have recently given birth to babies with a rare disease, so small, yet so big, they are connected now…..we all have our stories……another reminder why we do what we do…

Until our next video call Ramirez Family; action items noted Hot pink Mohawk and Tide detergent, stay tuned…

Posted in Patient Stories
17 comments on “The Start Before the Start……
  1. Beth Songer says:

    What a nice piece. I’m also running the Boston Marathon for a Rothmund-Thomson patient named Shauna. She and Mr. Eli are good friends :-) We’re due to meet a week from now at her grandmother’s Thai food restaurant and I can only hope the connection will be just as magical. I’ve already learned so much about a rare disorder I’d never even heard of before Shauna came into my life, and I’m looking forward to sharing awareness with others.

    • Kelsey Hoontis says:

      Beth thanks for sharing! Looking forward to running with you, hope all is well, enjoy your visit with Shauna and grandmother’s Thai food! :)

  2. Laurie Sperou says:

    I am so excited that you are running on behalf of the Ramirez family and Rothmund-Thomson Syndrome. I am the mother of Shauna, a 9 year old girl who also has RTS that Beth Songer is partnering with. You were one lucky lady the day you got to meet the Ramirez family! I’m sure it is a day that will be etched in your heart forever as it was for us. We had the pleasure of meeting Melissa, David and Eli at an RTS Sharing and Caring Conference in VA in the summer of 2012. We didn’t meet Sophia until later, through videochat as well, but she left the same impression on all of us! The weekend we met Eli was a very special time for us. The bond that these children make when they meet (and us parents) is indescribable as Rothmund-Thomson Syndrome is such a very rare disease. Approx 350 cases reported worldwide. We are honored that people like you have it in your hearts to help spread awareness for these diseases. I am greatly looking forward to the Boston Marathon and cheering for all of you!

    I hope you get the chance to meet the Ramirez family in person one day…you are in for such a treat! I have a beautiful picture of Shauna and Eli that I would like to post, but sadly I don’t know how to put it up on this site.

    I didn’t know about the Tide detergent….hmmm….starting to rethink reading this article to Shauna…LOL!

  3. Kelsey Hoontis says:

    Hi Laurie, pleasure to connect with you! :) You are right, I’m a very lucky lady to have connected with the Ramirez family, wonderful people! I’m Looking forward to meeting them one day…You can email the pictures of Eli and Shauna to me here, and I’ll forward along to the team leaders.(kelsey.hoontis@genzyme.com). Thanks so much for sharing your story and spreading the word/awareness for the rare disease community. Looking forward to seeing you at Boston and Thanks for the support! Oh and Shauna will LOVE the glow in the dark art work 😉

  4. phil says:

    What a great photo of Shauna and Eli on Beth’s Razoo page!!!!

  5. david buchanan says:

    Thank you for doing this for a special little guy who has a very special family.

  6. Lesli Graham says:

    Kelsey, I am Eli’s and Sophia’s great aunt and I live in Colorado. I have a fellow teacher who has run the Boston Marathon. It is so great to read your passion for helping others and bringing this rare disease to light. Eli and Sophia are incredible as are David and Melissa. We are so blessed to be related to this loving family. Sophia is creative beyond words and can sing with incredible maturity. I have a poster of Eli hanging in my classroom with Waldo Emerson’s quote, “Nothing great is ever accomplished without enthusiasm.” That is ELI! He is passionate about life and everything about it. You will need great enthusiasm to accomplish your goal. Eli can inspire you, as can Sophia. God bless you and keep us posted.

  7. Kelsey Hoontis says:

    Lesli- Thank-you for the kind words, it’s an absolute pleasure to connect with more of Eli and Sophia’s amazing family. I can’t agree with you more on Eli and Sophia’s contagiously positive, enthusiastic spirit- We will be taking that Ramirez spirit with us for 26.2!

  8. Anna Ramirez says:

    I am Eli and Sophia’s Granna(Anna with a grrrrrr). I get to be David’s mom and Melissa’s mol. I lived in Boston for 12 years and currently live in NYC. My husband and I have spent our lives working as non-profit employees and also went to the marthon several times. I am so excited that you are running for Eli and this rare disease. I will make every effort to be in Boston for the marathon. If possible, I’d love to meet you all and cheer you on, especially up heartbreak hill. Our family will do what we can to get the kids there. Just know, Eli has made our lives special and we know how blessed we are to be his family. By the way, he always wants a tour of our 700 sq ft apartment at 72 nd and Broadway. His favorite thing is when I hold the iPhone out the window and he can see trucks cars emergency vehicles and tall buildings. Keep me posted. I will support you. Thanks again.

  9. Kelsey Hoontis says:

    It’s an absolute pleasure Granna/Anna with a grrrr :) You have a wonderful Family! Thanks for sharing, NYC is a great City as well, I grew up going to NYC as my father lived/worked there for several years (non-profit), he is now in NJ- If I make a trip to visit him prior to Boston I shall let you know, it would be a pleasure to meet in person, I’ll keep you posted. Thanks again for all the support and reaching out.

  10. Debbie Hite says:

    What a beautiful description of interaction with this incredible family I am blessed to call my friends. I get the privilege of working with Melissa and have been touched beyond words by the love this family unit display. I could totally picture the animation of your tour of their house. Those kiddos display excitement and charisma that is so beautiful and endearing… You just get filled with happiness listening to them. I’m so glad you got to visit and I hope you will think of their zeal during your run and that it brings an extra bounce to your steps any time you are feeling tired. As well as a warmth in your heart that spreads to your whole body…

    I can’t wait to watch the marathon and keep an eye out for the pink Mohawk.

    I’ll be praying for you as you your run in honor of Eli and his super cool family. Blessings! Deb

  11. Kelsey–Thank you for your elequent words and sharing!
    WOW!
    Sharon

  12. Bobbie Groves says:

    What a treat to share with friends of my children. My name is Bobbie Groves and I am the Great Grandma of Sophia and Eli. I have been in the background with much love and support for this family. I want to add my deepest appreciation to each of you who support and encourage. This year we have all happily celebrated Eli on his 10th birthday and what wonderful time to be together. We have moved to live close to this family and what a blessing. There is never grumbling but praise and extra effort to take care of each day. Thank you for your goodness and we are looking forward to what God has in store for the Ramirez family of Jenks/Tulsa Oklahoma.

    Grandma Bobbie Groves

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