Alexandra or another Rett: Bone Marrow Transplants ---with caution

Wednesday, March 28, 2012

Please read the letter of Monica Coenraad, RSRT executive director, about how to approach the new find of Dr. Kipnis and his team.

http://rettsyndrome.wordpress.com/2012/03/28/bone-marrow-transplants-proceeding-with-caution/

Their are important insights.

Who I am

My name is Alexandra, I was born the 11th of December 1999 in Idaho. I was diagnosed with Rett syndrome in 2002 by the Baylor Laboratory , who found a mutation in my MECP2 gene. From that time life has been somewhat challenging, especially in the beginning. Everything was so new to us all, that we felt in and out of chaos and "normal" life...My wise sister Gabrielle stated to my parents at the age of 5: " What do you worry about...she is just making us stronger!" And she was right, my mom call me her master teacher. My life has changed a lot in the past 11 years, my family got used by my manifestations and I am slowly getting out of my own chaos. I am getting acclimated with my sensations and perceptions and can enjoy life in a more consistent way. My mom and I are excited by the exceptional possibilities of expressions this blog is allowing us to share. PS :( my wise sister is now a teen and if my parents worry , I wish they can remember her wise words " she is just making us stronger...! " :)

Wednesday, March 28, 2012

Bone Marrow Transplants ---with caution

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