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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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Sophia Sings, Sets The Gold Standard

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VIDEOS TONIGHT of Sophia's very first piano and voice recital. You have GOT to see the performance that all of Tulsa will be talking about for the next month-and-a-half. Prepare yourself for "The Glory of Love," which is the rendition the kid sings in the movie "Beaches." Our darling girl makes the song her very own, and the crowd actually gasped with delight at how she nailed it. And here's her piano recital. She's only been playing the piano for about eight weeks, so we're all super-proud of her for playing "Twinkle Twinkle Little Star" flawlessly and by memory in front of this big audience. She was the least experienced pianist in the show, so she played first. And since she was the MOST experienced vocalist (even performing next to teenagers), she also closed the show. We're just absolutely bursting with pride tonight. BONUS VIDEO: I know you're asking, "So when does Elijah start singing professionally?" It won't b...
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Pollicization

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Elijah's surgery finished yesterday right on time. He came back to me with a little nausea, which he overcame shortly. He slept with one eye on me making sure I was bedside. He progressively came around and even gave me a few laughs as we watched Dora together. The procedure yesterday was far more invasive than what he had done on the other hand. It is called Pollicization. Here's a definition: -------------------------------- Pollicization is a plastic surgery technique in which a thumb is created from an existing finger. Typically this consists of surgically migrating the index finger to the position of the thumb in patients who are either born without a functional thumb (most common) or in patients who have lost their thumb traumatically. During pollicization the index finger metacarpal bone is cut and the finger is rotated approximately 120 to 160 degrees and replaced at the base of the hand at the usual position of the thumb. The arteries and veins are left attached...
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