Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Sunday, May 30, 2010

IRSF Conference 2010

What an amazing weekend! Wes and I went to our first Rett Syndrome conference. It was pretty intense, but so motivating. We have learned so many ideas and techniques from the experts and from other families (the other experts). Seeing how successful other girls are doing in school and with their communication is inspiring, and gives us hope for Abby's future.

By far, the best part of the conference was meeting other families that share this common thread with us. There is an immediate connection that makes conversation so easy. Everybody "gets it". It gives us the overwhelming sense that we are not alone in this. All the crazy things that we deal with every day are ordinary for this weekend. It's great.

When Abby was first diagnosed, I didn't know how to think about the possibility of a cure. I didn't want to let myself believe that Abby could live the life that I had dreamed for her, with the fear that those dreams would be crushed again. I also didn't want to be pessimistic, and accept the inevitability that this was a life sentence for Abby. This weekend has given me a chance to appreciate the path that we are on with Abby, while still believing that her life will likely be impacted greatly in the future by a treatment or cure. The possibility is there, but I don't have to hang on to it for dear life. Life is good now.

Location:Colorado springs


  1. yay! love this! soooooo fun to meet you guys! sorry we didnt have more time to chat. I think we should do a non rett related weekend for moms one of these days!!

  2. Well said! I am with Erica, we need a Mom's weekend, maybe one without a full lecture on genetics ;-)