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Retts Syndrome

Posted by on Nov. 19, 2012 at 6:44 PM
  • 6 Replies
My Niece was diagnosed with this when she was around 18 mos. - 2yrs old. Does anyone know of or have a daughter or family member with this syndrome? I just want to get more insight on others experience with this and any tips on how to deal with this, i really want to be supportive and find ways to help.
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by on Nov. 19, 2012 at 6:44 PM
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Replies (1-6):
Cafe Robin
by Group Owner on Nov. 19, 2012 at 7:08 PM

Hi,

Check out this post for info on Rett Syndrome and feel free to reach out to the moms who replied...

Challenge: Raise Awareness about Rett Syndrome!

Hope this help!

((Hugs))

Robin

kansasmom1978
by on Nov. 19, 2012 at 7:28 PM

All I know about Rhetts is that it's on the Autism Spectrum

momtoBrenna
by Silver Member on Nov. 19, 2012 at 7:47 PM

It is not on the autism spectrum, it is a degenerative development disease as opposed to a pervasive developmental disease. It only effects females and they slowly lose their cognitive and physical function until they are bedridden and on feeding tubes. It happens at different rates in every girl effected but it always progresses that far. I am so sorry that your niece has it. Be as supportive as you can and cherish every moment that you have with her. 

gacgbaker
by on Nov. 20, 2012 at 7:50 AM

hugs

I'm sorry, I don't have any experience with that, but I hope you are able to find some support!

bamababe1975
by Stephanie on Nov. 20, 2012 at 12:35 PM

 This is great! OP, I hope you find this helpful. ((HUGS)) and good luck!!

Quoting Cafe Robin:

Hi,

Check out this post for info on Rett Syndrome and feel free to reach out to the moms who replied...

Challenge: Raise Awareness about Rett Syndrome!

Hope this help!

((Hugs))

Robin

 
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pangie23
by on Nov. 20, 2012 at 12:45 PM
Thank you all :-)
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