lost, numb and confused

N - posted on 02/16/2013 ( 5 moms have responded )

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Hi all . I'm so glad i found this group. I just found out a few hours ago that my angel has retts. Its the worst helpless feeling ever.

MOST HELPFUL POSTS

Anita - posted on 02/22/2013

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Natlyn,
I am soooooooooooooo very sorry for this being the one thing that you had to deal with. It sounds ever so hard and for that I am sorry but I am here to talk message me if you would like and we can talk. However, I do not want you to give up and spend the next month crying I want you teaching your daughter her words walking grabbibg holding etc. I also want you to pray to the Lord and remember that GOD IS GOOD and he knows how much you can handle I promise this is scary yes but not the end of the world you have your daughter to wake up with a smile on her face
Shanita

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Anita - posted on 02/23/2013

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You go girl !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! rock it change it believe it and run with it God put you there for a reason

N - posted on 02/22/2013

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Thank you for your support. Its so difficult but you are right . God is a great God and has a plan and purpose for everything. I feel i was brought here to help all these little retts angels as much as i can. The sad part is that here in south Africa it's hardly talked about so there isn't much support. I plan to change that.

N - posted on 02/22/2013

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Hi shanita

Its the worst nightmare come true. It is a neurological disorder which only starts showing from 18 months and happens to girl babies. Robs them from speech, walking stable out at all, hand movements. There us no cure as yet. Its so hard yesterday i cried so much and i prayed and i was so upset

Anita - posted on 02/22/2013

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What is Retts? I know that you are feeling helpless but you are doing the best you can with taking care of your baby she needs to know that you are going to help her through this and you seem to be doing that so wonderful job with that.

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