Nine year old Sara says I Love you for the first time.

Our daughter has Rett Syndrome. As a baby, Sara could say momma, hey and ball. Then Rett syndrome stole her ability to speak and the use of her hands. Due to Rett, Sara has never stood, walked, crawled or even sat on her own. She has seizures and scoliosis requiring many surgeries. Rett stole her ability to chew and swallow so she uses a feeding tube.
Rett has caused many problems for our sweet girl, she even survived cardiac arrest and respiratory failure. However, Sara is always happy, smiling, laughing, giving kisses and hugs. She is a happy kid, loves everyone, loves school and shopping. Sara is a blessing in our lives. She can say hey and I love. Today her grandma was playing with her and she was laughing so hard I grabbed the camera. Then to our surprise Sara said "I love you" for the first time in her life! What an amazing blessing and many tears of joy followed. Enjoy!

To learn more about Rett Syndrome, visit www.rsrt.org
Rett has been reversed in mice & scientists believe it CAN & WILL be reversed for these girls. If you would like to donate to research contact me. Every single dollar helps. Thank you.

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• retts
• retts syndrome

[velvethome]

I love this video! My 4-year-old has Retts and has a similar story with speech. Adeline and my mom are so close, I call them BFFs. I love that Sara's first "I love you" was for her grandma! They are a huge support for us mothers. Go Sara!

[THanna3182000]

@velvethome Sara is def. a grandmas girl. She has grandma wrapped around her finger! Where are you from? We live in SC. Sara was dx right after she turned two.

[HarryPotterFan4Life5]

Oh my god!!! She actually walked! I had no idea some retts girls could talk! My sister has a more severe case of retts and will never be able to talk. ... :'(

[THanna3182000]

@HarryPotterFan4Life5 When Sara was dx, right after age two, they told us she would never talk, walk, crawl, or be able to do anything for herself. Sara has a severe case as well, she has never walked, crawled, stood or sat on her own. She has severe reflux, constipation/gastro issues, scoliosis (5 back surgeries), and has a feeding tube. But she is very happy & loving. She can say just a few words hey, yeah, I love, I love you, & only when she is super excited. Don't give up hope.

[THanna3182000]

@HarryPotterFan4Life5 There are some rett girls who can still say a few words, still walk a unassisted, sit up and stuff. There are diff. degrees of severity. Are you on facebook? I am friends with A LOT of rett families there, it's a great support group & they all understand how we feel. Whenever I have questions or need advice that is where I go. You can look me up on there if you want. Lookup drgnlnce2003@yahoo.com

[funkiegrl]

That gives me so much hope, thank u for that. My daughter Emily (8) also cannot walk or sit unassisted, she is developing scoliosis and has had a gtube since she was 3. She has been hospitalized a few times for pneumonia. I was always sure she was saying mama when she gets very upset (which is rare, she too is always happy), but now I have no doubt. Your Sarah is a beautiful amazing girl.

[THanna3182000]

@funkiegrl Keep encouraging Emily, hopefully she will get out a few more words  :) Our girls are full of surprises.

[velvethome]

@THanna3182000

We are from Texas, Addy was diagnosed at two as well.

It's been quite a ride, and I look forward to what's to come.

Your video is very inspiring!

[munequitasyntetica]

OH MY I hope i hear my lulu say that someday

[SelenaL10]

That's really cute.

(:

[zzaproot]

Our daughter Adele tested negitive for Rett Syndrom but has all the markers for it, we expect she will be diagnosed with Rett as 10% or Rett girls do not show positive on the gene test. Adele only says Uh-Oh and can walk but I fear she will loose these skills as it seems most Rett girls lose their skills-from what I understand. I have posted a few videos of Adele on my channel. Its such a blessing to see how other families are doing and how girls like Sara are striving.