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Make an online donation to Rett Syndrome research in honor of Nora! |
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Special Thanks for Nora's 2012 Donors
| James O'Brien | Katherine Naef |
| Hands-On Massage Therapy | Jocelyn Leithead |
| Benjamin Hansen | Michael Tullis |
| Beth Burd | John Larsen |
Nora's Story
Nora was born July 29, 2007 a healthy baby. From early on she was almost off the charts in her height and was a very healthy eater, gaining fast and eating lots. From day one Nora had such a bright look in her eyes, she smiled a true smile very early and she giggled before 3 months old.
She was a little slow to reach some of her milestones past the three month mark, like rolling over, sitting and crawling, but we didn't think too much about it. Of course we knew she would do things in her own time. She started to babble a little, mimicking sounds like: "baba", "dada", and a funny "tdthh" sound. That stopped after a while and we noticed that she never really played with her toys, just hit at them and dropped them. We were starting to be a little concerned with her development by a year when she still wasn't crawling or gesturing or playing and had some quirky behaviors. We got Nora into therapies and after a while, thought she needed to see some specialists for a diagnosis on what we thought was Autism.
Nora was diagnosed with Rett Syndrome on August 7th, 2009 a little over a week past her 2nd birthday. It was very sad news, but we finally knew what we were dealing with. We also knew that it wouldn't change the way we love our little girl and our hearts are filled with more love each day for her.
Nora goes to school three days a week for a few hours and while she's there she receives therapy. She loves school and we are seeing little improvements that keep us encouraged. We hope someday that Nora will be able to communicate with us a little better. It seems sometimes that she's trapped inside a body that won't work for her and all we want to do is let her be free. While Nora has never talked and never "played" with her toys, she is still the sweetest little girl. She wins the hearts of everyone she meets and still has the brightest eyes... and cutest giggles.We hope for a cure someday that will set our little girl free.
And a little insert here: We are so happy to be able to say that Nora can walk! She gained this skill a few weeks before she turned 3. Way to go Nora!
Nora's Favorites:
Ice cream
Bouncing on beds
Faces
Swinging
Babies/dolls
Lights
Fruit snacks
Butterfly kisses
She was a little slow to reach some of her milestones past the three month mark, like rolling over, sitting and crawling, but we didn't think too much about it. Of course we knew she would do things in her own time. She started to babble a little, mimicking sounds like: "baba", "dada", and a funny "tdthh" sound. That stopped after a while and we noticed that she never really played with her toys, just hit at them and dropped them. We were starting to be a little concerned with her development by a year when she still wasn't crawling or gesturing or playing and had some quirky behaviors. We got Nora into therapies and after a while, thought she needed to see some specialists for a diagnosis on what we thought was Autism.
Nora was diagnosed with Rett Syndrome on August 7th, 2009 a little over a week past her 2nd birthday. It was very sad news, but we finally knew what we were dealing with. We also knew that it wouldn't change the way we love our little girl and our hearts are filled with more love each day for her.
Nora goes to school three days a week for a few hours and while she's there she receives therapy. She loves school and we are seeing little improvements that keep us encouraged. We hope someday that Nora will be able to communicate with us a little better. It seems sometimes that she's trapped inside a body that won't work for her and all we want to do is let her be free. While Nora has never talked and never "played" with her toys, she is still the sweetest little girl. She wins the hearts of everyone she meets and still has the brightest eyes... and cutest giggles.We hope for a cure someday that will set our little girl free.
And a little insert here: We are so happy to be able to say that Nora can walk! She gained this skill a few weeks before she turned 3. Way to go Nora!
Nora's Favorites:
Ice cream
Bouncing on beds
Faces
Swinging
Babies/dolls
Lights
Fruit snacks
Butterfly kisses
