T- ?hours:Musing 1- Hands are Clasped

imageHand clasping is the signature sign of Rett Syndrome. It prevents most girls from using their hands. Katie is very, very fortunate to have pretty good hand use, incredible hand use if you take Rett syndrome into consideration.

This morning I told her…today may be the day we find out if the medicine you helped learn about is helping the little ones. She looked at me and smiled.

Now, I’m sitting here watching her on the patio. All I can see are her legs and hands. Her hands are clasped. And, I imagine this one time not they are not clasped because of Rett syndrome, but in a physical plea for those young girls. A plea from one Rett sufferer to the others that Trofinetide worked. I can imagine this because when Katie regressed after the last trial and cried and cried for days, the only thing that made her stop was to tell her how amazing she was and that what she was going through was going to help the little ones with Rett syndrome. You see, my girl understands all about Trofinetide. She knows what’s at stake.

And, today, I’m clasping my hands, too.

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This entry was posted in hand clasping in Rett syndrome, Neuren Pharmaceuticals, Rett Syndrome, Trofinetide, Trofinetide Pediatric trial, Uncategorized and tagged , , , . Bookmark the permalink.

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