I’m excited about my 3rd year as a Run4Rare marathon runner! This year, I am honored to be paired with the family of Grace Webster, a loving 8-year old girl with a strong spirit who died after a long struggle with Hypothalmic Hamartomas (HH). Her story can be found here:
http://hopeforhh.org/featuredfamily/websterfamily-1.html.
As I begin to learn her story and meet her family, I am reflecting on what this year’s experience will be like for me. I have been a runner for many years and have qualified for Boston based on my time. I have high expectations of running faster than ever this year but in many ways the training is the easy part – I just need to do more of it to achieve my goals. And the fundraising – I’ll do ok. The hardest part for me is the social / relationship-building aspect of Run4Rare. I tend to be more of a private person and fairly busy with kids, work, training, etc. I don’t communicate much via blogs, facebook, or IM. However, as I experience Grace’s story, read blogs on this site, and tune into the energy of this team, I am drawn by the possibilities of putting myself out there more.
So in 2016, I am challenging myself to be more outgoing about the whole thing – put in extra effort to understand Grace’s story and connect with her family,  share training tips via the blog, and be more persistent with the fundraising. Starting right now!
90 days to Boston, let’s go team!
Thank you Jason for running for Grace and Hope For HH! We feel so very blessed to be part of this amazing project!
I am a mom of a rare child, and wanted to say I was touched by your story and Grace! Her strength and love for her family was beautiful.
I will remember Hypothalmic Hamartomas (HH) and Grace.
Blessings
Thank you Nicole for your kind words! Our wish now is to never let Grace’s life with HH and our family be forgotten.
What a great tribute. I’ve known Grace’s Dad since childhood and I’ve been blessed to now know the entire family. They are an amazing group of people that exhibit great strength and resilience. Their struggle and loss wasn’t a 5k, it was, and is, an on going marathon. I now have another runner to send positive vibes and support to. Thank you for doing this, I hadn’t heard of it before. When you hit that wall at 20… know that if you spend even an hour with this family, you will be willing to crawl that last 6.2 if you have to.
Love you Stephanie Deveau. So blessed to call you a friend!