Rett Researchers and my Role

I’m excited today because I have been contacted by three different Drs in the past couple of months who are doing Rett Research.  One was from Italy, one is from Australia, and the others are from our state of Minnesota.  I haven’t been able to do the paperwork yet, but my Mom and I are starting on it today.  The Dr from Australia is Dr Helen Leonard.  They are excited to have me answer the questions because it is the first time they have someone who has Rett Syndrome and can answer their questions.  It is fun and scary for me, because I want to help them. It is hard for me because so much of my life I wasn’t believed so the difficult questions about the details of Rett Syndrome were asked of my Mom not me.  I am so honored that they are interested in my answers. The group from Minnesota sent a huge package for us to fill out.  They said I could answer some of the questions too. Their questions include some of the tests that were given to me in school.  I hated them.  They always show those of who have many physical challenges and are non-verbal to be very mentally impaired.  I don’t want to continue that belief about girls with Rett.  They haven’t been as easy to convince that I could answer most any question they would have about my life with Rett, but I do not give up hope. 

I know that for me, because it is easier for me to communicate, that my job is sharing my life and story so I can help others who live with this disorder.  I don’t want to just live for me and when I die to have a world that is the same place it always was for my silent Rett friends.  I love my life even when it is hard.  I feel respected and honored today.

 Love, Karly



3 Responses so far »

  1. 1

    Sandy said,

    Karly it is so wonderful that you are willing to work with these doctors and help other girls and women with Rett. You and your family are amazing and I am glad the world is getting a glimpse of that. You will help others, of that I have not doubt. God bless you for your determination and your unselfishness. You always leave me inspired.

    Love Sandy

  2. 2

    jill johnson said,

    Interesting, Karly, and good luck.
    Helen Leonard has known for 20 years that Kim can communicate, but hasn’t asked her a question.
    Kim has completed her school leaving certificate, and is now doing a university Arts course, so as you can imagine, she is very very busy – her typing is very slow, and she can’t turn the pages of her books – we do.

    All the best to you and your mother

    • 3

      spiritdances said,

      Hi Jill
      I’m so excited to hear from you. I’m so happy for Kim that she is able to go to University. I would love to do that. Maybe someday I will. It is now 6 females that we know of with Rett that can commuinicate with facilitated communication. Is Kim able to email me?

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