In Spite of Rett

I am always honest on my blog because I think it helps everyone understand that my challenges with Rett are difficult too. This has been an amazing week in my life. I was interviewed for TV. They are going to do a five to six minute story when my CD is ready for sale. I have planned more details with my mom and friends Sandy and Margie for my CD release party. I met with my producer Barbara and funder Jammi with a local musician named Peter Mayer. I wanted to ask him about how he does his music CD’s and things about his business. He and his wife were very nice to me.

Peter Mayer was so encouraging

Maury Glover, Fox9

Maury was fun.

I wasn’t feeling great all week. It was Rett stuff. I was so hyper it was painful.  I couldn’t relax my body enough to stop hyperventilating so hard I couldn’t control my movements. It is so hard to know that I am being watched and have cameras taking my picture when I am holding my breath.  It’s one of the things that is so hard for me, that I hope they find a treatment for.  I was trying to relax and enjoy my week, but being so visible when I’m like that, is hard. I told my Mom that even though I was struggling with these things, I wanted to go ahead with the interviews. It is real.  It is what girls with Rett syndrome experience. I get excited about things that are wonderful and I can’t seem to control my responses. I was so happy for all the great things that are taking place, but it’s exhausting to be so hyper. I have another interview today and I feel much calmer.  I’m meeting Lisa Evert from the Mn Rett group who is gong to interview me for their newsletter for Rett families. I hope my story will inspire others who live near me. 

My CD is going to be ready next Monday.  I will see it next Thursday and the following week it will be at CD Baby. It’s a wonderful happy, time.

Love, Karly


3 Responses so far »

  1. 1

    Lisa Jenkins said,

    I’m so excited for you! Such wonderful things are happening in your life. Doors are being opened for you to touch the lives of many people! I’m thrilled that your CD is almost ready! Please post info on how I can buy a copy.

    God’s blessings to you!

  2. 3

    Bethany said,

    I feel speechless at all the things you are able to accomplish with the support of so many! I am so glad that your CD and the news story will be available soon! Even though I am across the country, I will do my best to be your #1 fan!! :O) Love you! Forgive me that I am not so hot at emailing. I will get on that right away…like tonight!

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