Areah & Rett Syndrome

[cutestuff988]

Aww she sure is a miracle my cousin has it a lot worse he's very weak

[areahisawesome]

My name is Areah :D

[hippyable]

this beautiful little girl always smiles and here I am crying my eyes out!

[cbrown113]

@hippyable She's full of life... smiles are contagious, be blessed and thankful... we are everyday... :) thanks for taking the time to watch our video :)

[cbrown113]

@hippyable She's full of life... smiles are contagious, be blessed and thankful... we are everyday... :) thanks for taking the time to watch our video :)

[321Odie]

What a beautiful girl !! Are you going to put more updates online?

I look forward to see those!

[cbrown113]

@321Odie I haven't but I def think it's time for an update. :)

[xxxAlphaxxx5]

your daughter is a beautiful girl. why does she need a pacifier ? how old is she ?

[cbrown113]

@xxxAlphaxxx5 Areah is 12 years old. She does not "need" a pacifier. As a part of her disorder Rett's syndrome, she constantly bites her hands and fingers. The pacifier is just a distraction of her fixation. It just temporarily prevents her from putting her hands in her mouth. So that she bites on the pacifier instead of her fingers. She also has arm braces to keep her from that also... thanks for your compliment and waching our video! :)

[xxxAlphaxxx5]

@cbrown113 welcome.will she try to take the pacifier out fr her mouth?do she feel pain when she bites her hand and finger?

[paws4piper]

@cbrown113 I understand the use of the pacifier. My daughter is 3 and she SIB's (self injury behaviour) with her mouth by either biting herself or hitting/slapping her mouth when she is stressed. I would much rather the disapproving looks of others than her hurting herself. Our children have to come first and whatever works! Areah is a beautiful girl and it looks like you have a very strong and supportive family behind you. We are currently waiting for results... I just want answers. God Bless.

[xxxAlphaxxx5]

@cbrown113 Wont she spoil the top part and accidentally swallow it ? you can wear her a glove , i think a hand glove is better as its save and maybe acid-free as some pacifier made up of a little amount of acid .

[xxxAlphaxxx5]

@cbrown113 But won't she bite the top part n swallow it ? it is bad then

[cbrown113]

@xxxAlphaxxx5 No she wont swallow it. She is aware that it is no food. She has never tried to swallow. Despite her disorder she has senses and reflects and does know alot. She is very smart and is very keen to certain things. So i do not think the pacifier is at all dangerous for her to have or we would not allow it. :)

[xxxAlphaxxx5]

@cbrown113 oh i see..okay then..so she does all her meal with her g-tube ? so do drinking water ? And early X'mas wish from me to your angel and family

[cbrown113]

@xxxAlphaxxx5 No she does not use a g-tube or any feeding tube. She eats chews and swallows all her own food. She is able to feed herself, (well half in her mouth and half on the floor) :) She is very functional and very aware. Despite her disorder she is a very happy girl. She gets excited to eat, smiles laughs and def communicates with her eyes. I will have to post video to show her more active. Thanks for the wishes and you have a happy holiday! Thanks for your comments :)

[xxxAlphaxxx5]

@cbrown113 well i think i have a little confuse but still thanks for the information that you given to me.

[OOoiamFRESHoOO]

I have a little girl with retts , too, she is 15, and is mixed race as well, shes beautiful, good bless

[Silentdoor]

I have a daughter, Sinaia,8.

She have a mental disorder whit autism and cerebral problems. Since August 09 she slowly starting to lose some of the skills (talking,balance) what she allready lernd.

How old are children whit Rett-Syndrom when they start to loose theyer skills?

Sorry i ask you this way, bud i dont know anyone whit a daughter who have Rett Sindrom and your daughter littelbit remember me on mine. Shes verry cute.

[cbrown113]

They usually start showing signs by the time they are 2 or 3. They begin to lose their motor skills and speech. Although, the symptoms vary with each girl.... Areah's first signs were loss of speech and she began to have seizures. Most of the girls become epileptic.

[cbrown113]

Yes, I have heard about the studies and findings. As of right now they are still researching. They were able to reverse it in mice but from I know have not tested on humans... I am hopeful we will find a cure and our babies will have a better quality of life! I know Areah will benefit from this in her lifetime.. that's how close I believe it is...thnx for the comment... :) And watching our video

[Silentdoor]

Thanks for Replaying! I wish you all the best !

[juina14]

@Silentdoor depends of the information on the first stages of the growth of the girl, of the development and continuous evaluation of clinical history, and the physical and neurological state of the girl. The diagnosis of syndrome of Rett is descriptive and it is based on a set of signs and symptoms, but is not etiológic. i have a little girl with retts too, so if you need to talk or ask just write me anytime. good luck. i hope the bess for you and your child.

[StephieLockdown]

I've been watching video's of children with rett syndrome. I was told they found a reverse of rett syndrome, but the government won't fund it? This girl is real beautiful! She looks soo happy!

[birds16ful]

Thank You Alienchick1

[birds16ful]

Is Rett Syndrome like Cerebral Palsy. I am 16 & I have Hemiplegia Cerebral Palsy. A disabled person will teach you not or will can do in life.

Just be lovely to everybody with a disabled.

God Bless Areah

[Alienchick1]

No Rhett is not like cerebral Palsy, it is a condition where the child meets their mild stones till a certain age then for some reason stop and start going "backwards" ie they might get to crawling stage and talking then stop talking and crawling so instead of going 'forwards' as such they start doing the reverse

[phineasandferbrulz]

@birds16ful no. they are very different. cerebral palsy is a brain injury caused at birth, and Retts you have all the developmental milestones until a certain age and you start going backwards.

[jandergirl1]

Thanks for the invite and i would go if i was in the area, but unfortunately i live in PA. I could use all the info i can get on Retts this is all very new to me. what i know about his daughter is now she is loseing her ability to walk and she is allergic to milk and all milk products. tho she is very aware of her surroundings she got excited when i had my children over to visit and she likes kids very much.

[jandergirl1]

She is very beautiful. My boyfriends daughter is 9 and she has Rett Syndrome also. I have been trying to educate myself on this so that i can be there for both him and her. God bless ur family!!

[cbrown113]

Oh Thanks.... If you need any information, just let me know... Also, I'm not sure where you live but if you are in the SO. Cal. area we are having a family Picnic Fundraiser for Rett's on October 13th! We do it once a year and is fun for all the families and supporters of Rett;s... Well God Bless...

[dumbnotfunny]

my names areah =O man..=[ i thought i was the only 1 =[ now i dont feel special

[LadyWeasel]

She is very beautiful :)

[stellachops]

Your daughter is beautiful.

[dumbnotfunny]

omg! finaly! =) my names areah too!!!!! omg i though no one else had that name!

[kirstydiddlyworsty]

You have such a beautiful family, your daughter is an angel.

god bless

xx

[cbrown113]

Aww. thanks. They are a blessing. Areah is such a joy. She teaches us everyday about love. Thanks for watching her video. :)

[dumbnotfunny]

hi my names areah too 1st i though there would never be another areah accept for me =] i guess i was wrong well im 12 and it's finally nice to find someone with the same name as me i always felt like an outcast but now i feel better

[maikro58]

She so beautiful! I have a daughter thats 5yrs old and she has rett.

[maikro58]

She so beautiful! I have a dughter at five years old andshe has rett.

[divadivare]

She's a beautiful little girl with a beautiful name. Where did you get it from?

[maseeruth]

Wonderful video shes beautiful. my daughter kiana is 11 and has rett to. Kiana also has that same brown jacket Areah is wearing..

[CCREMBOY]

Beautiful girl, wonderful video. Thanks, Joni

[LilLiz5150]

The video was awesome, who put that together? Very nice!

[bfarnu]

She is so adorable and happy. Thank you for putting this together.

Beth,

Mom to Ella, Age 3, T158P

[ButlerCrew]

She is beautiful! Thank you for sharing her with us!

Kelly,

Mom to Brooklyn, Age 3 R168X

[cbrown113]

Thank You for taking the time to watch the video! :)