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Elijah Will Be Represented at Boston Marathon 2014

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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 j...
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In Shreveport

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We are in Shreveport and checked into our hotel for the week. Shreveport has been inundated with evacuees from the gulf coast. Shreveport itself is preparing for floods, tornadoes and high winds. We are happy to be here, nonetheless. The Shriner's Hospital told us that as long as the hospital has power, the surgery will go on as planned. We decided to make the trip with faith all will be fine. Eli has a runny nose and a cough. Ugh! Please pray he makes a miraculous overnight recovery from anything brewing in his body. Right now he is sitting on the big bed watching Finding Nemo on the tiny DVD player. He is so happy. More from us soon. Much love, Melissa
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DAY THREE: Eli's Power Workout

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Almost an hour of footage tonight! My mother, Anna Ramirez, known to Eli as "Granna," did the filming today, and she decided EVERY moment was worth preserving for posterity. She was right, of course. 1. PLAY TIME: Elijah gets the day started with a puzzle. Super cute. 2. STRETCHES: We have a lot of work to get the tendons on the outside of Elijah's legs limbered up. Right now, whenever he tries to bring his legs together, these tight tendons naturally pull outward and resist him. But we'll get there. Meanwhile, look at what a great attitude he has. 3. DOGS AND STRETCHES: Before we finished our morning stretches, we got a visit from Rose, a rescued puppy who came to the Shriners Hospital to spread some cheer. She had no idea what a great dog owner Elijah already is, and she was in for a treat. Rose would come back later for another visit... 4. ELI'S WALKER: It's all smiles as Elijah works to master his newest walking tool. We are bursting with pride at this poi...
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