Friday, January 17, 2014

Elijah Will Be Represented at Boston Marathon 2014

Our dear friends the Sperou family in Massachusetts recently asked if we'd be interested in seeing Elijah represented by a runner during the upcoming Boston Marathon in April 2014. Of course we said yes! What a fantastic opportunity, to know that someone has dedicated themselves to running 26.2 miles, thinking about Eli the entire time, working to raise money for children like Eli who are dealing with rare diseases.

Kelsey Hoontis, our new superhero, is sponsoring Eli as part of an organization called "Running For Rare Diseases." They recently spoke with Christopher and Laurie Sperou about sponsoring their precious daughter, Shauna, who became a good friend of Eli's during our visit to the Rothmund-Thomsen Syndrome conference in Washington, D.C. Kelsey is one of three (for now) runners who will be representing RTS kids, and I'll tell you honestly, it feels so good to see Eli's syndrome garner more attention. We felt so alone in those early days when we had just learned what Eli's syndrome was, and there was little chance of meeting someone else who had the disease. Now we're part of a network, an extended family, and the support from a legitimate support system is, well, supportive!

Would you be interested in sponsoring the runner who's sponsoring our son?

Click on this link to see the Running For Rare Diseases blog. You'll learn how you can financially support Kelsey during her run, and in turn sponsor medical research for rare diseases in general and RTS specifically. Forward the link, and spread the word! It would mean so much to me personally, and it will be a great way to be a part of Eli's life.

Write back with questions! I'll tell you what I know so far about the Marathon. If we're able, we'll be in Boston for the run. That would be amazing!