From Facebook....
The page is open and public so I can post here without violate the privacy....
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Were thankful for a lot of things this year but from this little video of Amy walking along on her own due to the NMZ trial meds Amy was on for 3 weeks back in June were amazing to us. Most of the time at her age of 21 she is lathargic and laid back and we have to move her along and she tends to keep her head down, but from the clip you can see what 25% dosing does for her. The 2nd trial is underway at 50% dosing so I can only imagine what that may do. Sometime next spring or later we hope to move on to the drug being available for dosing at home and we should be in that group thanks to our little rett angel volunteer. God bless, and from our family to all of you; happy Thanksgiving!
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I get so excited watching her progress! Our daughter is 10 so she was too young for the trial, but I have her on the list for any future trials! What other improvement did you see?
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And here the video...
https://www.facebook.com/photo.php?v=564755340269646&set=vb.100002055568707&type=2&theater
nnz trial progress from fb
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