If you are interested in learning more about Rett Syndrome, KSL posted the story that ran last night on their website: http://www.ksl.com/?nid=148&sid=8649182. The doctor that they interviewed (Dr. Rope) is Becca's geneticist. They talk about some interesting stuff!
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This blog is for and about our little girl, Becca. Becca was born with low muscle tone and has been consistently behind in her development. She's now six years old and doesn't walk or talk or feed herself. In 2010 Becca was diagnosed with Rett Syndrome, a neurological disorder caused by a genetic mutation.
Becca is BEAUTIFUL! My daughter Brooklyn is four and has Rett Syndrome, stop by our blog if you would like, I have lots of Rett informational sites on there you might like to read, plus links to other blogs of Rett families, which I would love to add yours, drop me an email and let me know if that might be ok!
ReplyDeleteKelly
Hi! My almost 9 year old daughter has Rett Syndrome as well. I just watched the videos you linked to -- Dr. Rope does not mention the study from 2007 that reversed the symptoms of Rett in mice. Here is a link to that news if you can forward it on to him:
ReplyDeletewww.girlpower2cure.org/files/Hope_raised_for_reversing_severe_childhood_disease__Reuters.pdf
I can send you the actual paper -- you should check out this website: www.ReverseRett.org.
Our organization is www.GirlPower2Cure.org.
Feel free to contact me! I would love to get to know you and Becca more! Take care!
Ingrid Harding
ingrid@girlpower2cure.org