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Showing posts from July, 2012

You must be very special!

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David, Eli and I spent a few days last week in Virginia at a conference for people with RTS and their families. Rothmund-Thomsen Syndrome or RTS is a very, very rare genetic disorder that causes a list of things to be different. All people with RTS have the skin rash you see on Eli. They can have radial ray defect (missing radius bones and thumbs, like Eli). They can have short stature (meaning they grow slowly, like Eli). They can have missing patellas. The list goes on. Actually, I'm not sure a comprehensive list of everything an RTS person can have even exists. We really enjoyed the trip. I loved it when Delaney, a 7 year old, met Elijah for the first time. Quickly after sitting by each other Delaney says to Eli, "I only have four fingers." David, standing behind Eli tells Delaney, "Eli only has four fingers, too." Delaney's eyes bugged out and her mouth dropped open. She didn't say anything for a few beats and then exclaimed excitedly, "You