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7 comments:

  1. Hey, Liz! Good start to your blog. Keep it up! Ruth

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  2. Hello Liz,

    I wanted to pop a comment in to let you know that I came looking for your blog after I got back to the ward today. I have a terrible memory and wanted to find it while I still remember the name. I've started reading, Jessica is a beautiful girl, and the cure can't come quickly enough for her and the other Rett girls I know x

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  4. Hi Liz, I stumbled across your blog whilst looking at blogs about hypotonia, my son has 4q deletion syndrome, he is 19 months. I take him to a special needs group and some of the parents there take their children to Chestnut tree house for respite care, have you heard of it?we live in Brighton and it is near here somewhere. I hope this helps, Jessica looks like a lovely little girl , Harriet and Dylan

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  5. Hi Harriet, Thank you for your message. I looked up Chestnut Tree House and it looks like it is an amazing place. However, it is too far away for us and we would still have the all the funding issues! I also looked up 4q deletion syndrome - I hope your son is doing ok. Liz x

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  6. Hi Liz, the girls has grown so much since.I am so glad you have the blog so I can follow things up.Marina x

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  7. I ran across your blog on Jessica because I have been working with a man with a granddaughter with Rett. I would like to pass his blog on to you in hopes of blessing your family.

    It is about how epigenetics and technology helped his granddaughter. I believe that the information will benefit you.

    http://improvedrettlife.blogspot.com

    Even though you are in the UK and we are in the US, I work with others all over the world.

    God Bless you!

    Have a beautiful weekend.

    Stephanie

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