Communities

Victoria Rose is a silent angel of Rett Syndrome

All Communities > Victoria Rose is a silent angel of Rett Syndrome > Jesus sent me a angel...Her name is Victoria Rose

Jesus sent me a angel...Her name is Victoria Rose

Vickielynne - posted on 06/23/2009 ( 2 moms have responded )

32

18

Hi, I searched all the groups and there wasn't a group for Rett Syndrome .We need to get the awareness out about this devastating girl disorder. My angel was diagnosed December 27 2006 , We spent three long years looking for the correct diagnosis . I am the Executive Director of The Victoria Rose Rett Syndrome Society we are currently raising money to open a clinic at The Children's Hospital Denver Colo. I thought it would be nice to have a place to share our stories and help each-other with the day to day unexpected trials that happen to our angels that have Rett Syndrome. God Bless Vickie

we walk amongst angels...

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms

2 Comments

View replies by

Vickielynne - posted on 07/14/2009

32

18

Hi Anne, thanks for joining us and posting about Avery.I look forward to getting a snap of you little angel. Is it your daughter or son's child? Victoria is happy about 90% of the time . We are blessed with these girls they are angels to us and to God. God Bless Vickie

Anne - posted on 07/13/2009

1

19

Hi. I have a beautiful Rett Syndrome granddaughter named Avery. She just turned 3 in May and has been diagnosed since April, 2008. She still can walk some, but has pretty much lost everything else. But----- she can still smile and giggle at us and that makes everything all right. I will post a picture of her when I figure out how-not very computer literate but I try.

Want to find out the opinions of this community?

Add Poll