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Lilly and Kabuki Syndrome


DrKerry

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Talk about a turn of events in a persons life. A Doctor out in Maryland that we know has done the almost impossible. He has found a way to reverse Kabuki Syndrome!!!!!!! For those of you that don't know our daughter has a rare syndrome called Kabuki Syndrome and the doctors have been working on finding a way to reverse it.

Talk about a HUGE milestone for us!!!!!!!!!!!!

For anyone that wants to read the article..... http://www.eurekalert.org/pub_releases/2014-10/jhm-dti092514.php

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Great news 12. Yrs ago they found a way to reverse osteopetrosis (not osteoporosis) which I was born with and had chance to reverse its effects and was the first one too try it. It was a success for me. All the time in hospitals made me a modeler btw. So glad and happy for you and more so for Lilly

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Thanks Ken, good to see you again tonight.. We're hopeful this is going to open so many doors.....

I had a scare tonight with her though. On the way to AMG club meeting she had her first seizure. I turned to say something to her and her eyes and face were twitching like crazy. I about crapped, then she came out of it... Life of a special needs child has a lot of ups and downs.....

Dave, they say the trials are going to start within the next ten years. Not sure when but... Hopefully sooner than that!!!

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