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Raising Special Needs Kids Raising Special Needs Kids

anyone know about retts?

Posted by on Apr. 28, 2012 at 9:58 PM
  • 10 Replies

Hey everyone. Im Jacki, and the reason I joined this group is because my niece has retts syndrome. Her name is Jesley and she will be 3 in August. Are there any other mommies who have or know someone who has a child with this? They've known something was wrong with her since she was about 1. It was til about 2 weeks ago that they finally diagnosed her..properly. They thought it was autism at first, and then angelmon syndrome. I've read online, just some general information. But any other info from a mommy who knows first hand would be helpful. My sister in law is 26, and Jesley is her youngest of 3. The other 2 are boys, 5 &7. From what i've read so far...its not too common. About 1 in every 10-15,000 get it, and its mostly girls. Anyways. I am new to this site, but any info would be appreciated! thanks for taking the time to read.

by on Apr. 28, 2012 at 9:58 PM
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Replies (1-10):
mandee1503
by Amanda on Apr. 28, 2012 at 11:10 PM
1 mom liked this

Welcome to the group. I don't know, but here is a bump.

darbyakeep45
by Darby on Apr. 29, 2012 at 7:29 AM
1 mom liked this

Welcome to the group mama!

lifeisajoy
by on Apr. 29, 2012 at 7:40 AM

Welcome to the group!! Did you go to the site of www.rettsyndrome.org?  

Here is an authors name that has done a lot of research on Rett Syndrome--Van den Veyver is the last name

lifeisajoy
by on Apr. 29, 2012 at 7:54 AM

Also here is a phone number for the National Rett Syndrome Foundation--

1-800-818-7388

Elyssa414
by Elyssa on Apr. 29, 2012 at 9:21 AM
Welcome. I have a friend here in Seattle who has a daughter with Rett syndrome. (I met her in our therapy clinic waiting room, and now we are friends on FB). If your SIL is on FB, I could see about connecting the two of them?
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Elyssa414
by Elyssa on Apr. 29, 2012 at 9:21 AM
Or if you send me your email, I could pass it on to her...?
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i.heart.myboys
by on Apr. 29, 2012 at 9:27 AM
I do not know about Retts. But welcome to the group. I hope we are able to connect you with someone to aid you guys on your quest.
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CameronsMommy23
by on Apr. 29, 2012 at 2:07 PM
I don't have any experience with Retts syndrome but welcome!
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KikinSaiyasmom
by on May. 2, 2012 at 3:24 PM

Thank you! :D

jjamom
by Michele on May. 2, 2012 at 6:49 PM
Welcome to the group. I don't know much about it, but I keep seeing a van picking up kids at my son's school with an IRSF(International Rett Syndrome Foundation advocacy ribbon. I think the website on it is: http://www.rettsyndrome.org/ which may be helpful to your SIL as well. Sorry, I am on an iPad, so the link is not clicky. Hope maybe this will help.
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