My Friend Grace

It is a beautiful sunny morning here.  We love them, and I am outside writing this blog.  My Mom has our small recorder so while I’m typing she’s saying my words into the recorder. 

I want to congratulate my friend Tara Reddington in Rhode Island for the fund raiser they did yesterday to support Rett research.  They raised a lot of money to help find a cure for Rett Syndrome.  Their daughter Grace, is a beautiful young girl who has very severe symptoms related to Rett. She has been in the hospital a lot.  Tara has been so kind to me, and respectful and excited to hear of my experience in living in a body that has Rett Syndrome.  Please check out their blogpage:  http://www.theraceforgrace.com/

I am aware that I am fortunate.  I struggle with many things related to Rett Syndrome, but there are girls and women who are so much worse off than me.  I am recovering from another bladder infection and the resulting symptoms of many small seizures and exhaustion.  If I could prevent myself from getting sick, and all the trouble that comes with it, I would be so grateful.  We are working hard to stay healthy.  I am writing a lot for the camp that I am speaking at this summer.  I have most of my talks ready.  We were invited to the camp directors house yesterday.  They made a beautiful day for us. 

Here are some current pictures of me walking with Gregg, and me with Beau on our new patio.

Gregg and I walking

Beau and Karly on patio

Love, Karly

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1 Response so far »

  1. 1

    Bethany Crossley said,

    Oh Karly~ I love these photos and your blog! You are accomplishing so much….it makes me feel tired! :O) Keep up the good work! You let your light shine so beautifully!


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