I Am Amazed

I am sitting her this morning with my Mom, feeling so happy.  We were gone for an appointment yesterday and didn’t get home until late in the afternoon.  We checked my blog when we returned and discovered that hundreds of people had been on my blogpage! This was a new experience. Usually there are about 100 each day.  I want to tell you about how much joy I feel over the messages many of you have left for me.  Your words of hope and encouragement to continue writing give me strength.  I am not sure how it happened and how all of you have discovered my writings, but I am really grateful. I hope you find even little ways that you can believe in your daughters because of my ability to share my story.  If there are other girls or women out there who can communicate with me personally, I would be so excited to hear from you.  I think our voices together will help so many of our silent Rett friends.  I know of at least four and I know there are others. 


I want to start by saying, if you have specific questions related to Rett, please let me know.  There have been other parents who have sent me specific questions, and if I am able to relate to it, I will try and write about it from my experience.  In some cases my other Rett friends who can communicate with a keyboard, have written with me.  You can find a couple of our writings on MY RETT BODY.


 I know there are some Rett girls and their families who are having a really hard time right now and I send my love and encouragement to you.  We have had those too and I know how painful it is for my parents and for me when they happen. 


We are very aware how fortunate we are that we have discovered a method of communication for me.  I feel responsible for sharing my story in the hope that my words may offer insight.  It has given me so much joy to have a way to do this and reach people around the world. I’m continually amazed that there is technology available that allows me to support people in countries I have never heard of and will never have the ability to travel to.


 I wish peace for your day. As of right now there have been over 900 people who have visited my site today. Thank you and Thank you for giving me notice…a young woman who is silent and is now being heard around the world, is nothing but a miracle, and I thank God.

Love, Karly


2 Responses so far »

  1. 1

    Megan said,

    “a young woman who is silent and is now being heard around the world, is nothing but a miracle, and I thank God.” Beautifully worded, Karly!! For one who is outwardly silent, you have such a beautiful Voice. Thank you for making the great personal effort to share your experiences!

  2. 2

    sharon oneill said,

    Karly, this is the first time I have visited your blog and I am simply amazed by your abilities…. My granddaughter has REtt Syndrome and although I have to read all your entries I feel like it is my granddaughter writing these entries…. Annie is only 4and half but very very intelligent … just like you…. and you have given me a real insight into her world …. thank you so much for that….. we had always felt that Annie had pain ….. just like yours….. and the same feelings like we all have about certain things…. but your writings confirm that a girl llocked into a REtt body is no different on the inside than a girl who is not locked in…… your message about your beautiful mother made me cry…. she sounds just as loving and compassionate as my daughter….. Annie’s mother…… her name is Bridget and Bridget and Annie have taught all of us not to give up! Thank you again for your blogs….. enteries or whatever….. I am going to make sure that I read every part of your story…. and I WILL write to you again…. I have many questions…… Have a blessed day!!! Grandma Sharon and PS YES God has a purpose and a plan for all of us….. I totally agree…….

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