Rett Syndrome is Not the end of the World!

This has been an incredible week for me. I have heard from three families who have daughters with Rett Syndrome. I have found a new friend with Rett who I can communicate with in Oxford, England. That is a miracle to me. She is 21. We have been sharing emails this week, getting to know each other. I am so excited because there are so few of us who seem to be able to communicate. I know there are thousands who could, if they could be introduced to a communication way that worked for them.

Even more exciting and humbling to me are the parents who take the risk of asking me questions specific to their daughters. I hope and pray for those girls and their families that life changes because of the insights I can offer to them. I have some of the questions I have asked on my Q & A page, but I thought it might help if I wrote a series of blogs on a new page, that addresses some of the questions I get asked by parents.

I want to start by sending you great hugs and love, because you are doing a great thing by respecting your daughters enough to consider what I have to say. I am not a professional, but I live with Rett Syndrome, and I struggle to accept it myself. I am sure I will get too tired today, to write all that I have in my heart, but I will share all that I can as I’m able.  Check out the new page at the top of the screen titled, My Rett Body.

Love, Karly


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