Rett Syndrome

[gloriass777]

Your baby is beautiful. God bless her. I will have her and all babies who don't deserve to suffer in my prayers. <3

Are the doctors helping you with the reversion of the symptoms?

[gloriass777]

Why does Rett Syndrome only target girls? Is the genetic disorder only carried in the X chromosome?

Also, How can the symptoms be reversed?

[veiledexpressions]

@gloriass777

It is a mutation of the MeCP2 in the X chromosome in 90% of cases. While it can and does occur in boys, it is much rarer, and results in a very early death, sometimes before birth.

They're currently researching different ways to reverse the symptoms.

[QuasimodoOfNotreDame]

Retts Syndrome is one of the 5 types of Autism. The only "cure" should be the understanding and acceptance from society :)

[veiledexpressions]

@QuasimodoOfNotreDame

I really do not understand why it's listed as an ASD, but, you're right, it is. Sure, there should be understanding and acceptance, but this isn't like Autism. I have a form of Autism, and do not want a cure. However, Rett Syndrome kills our girls, causes seizures, discomfort, the inability to communicate, and other serious medical issues such as failure in different systems of the body (digestive tract, brain stem, etc...). It DOES need a cure.

[QuasimodoOfNotreDame]

@veiledexpressions Autism affects each person differently and depending on the how severe it is, it can also have effects that you've listed. Usually people with those effects are more severe and low functioning. People with mild or high functioning, such as Aspergers are more affected socially. I have many friends and a wonderful boyfriend with Aspergers. I love them just the same and I love many of their Aspie traits :)

[veiledexpressions]

@QuasimodoOfNotreDame

I have high functioning Autism, and come from a family with varying degrees of Autism. I understand the symptoms quite well. However, that doesn't mean I will agree that Rett Syndrome does not need a cure. Also, Autism itself, does not shorten life expectancy as Rett Syndrome does, nor does it cause many of the symptoms I listed, even in it's lowest functioning form (it can cause some). I do agree that Aspies are amazing. That may make me a narcissist. lol

[haggiss]

@QuasimodoOfNotreDame not really when it kills all males in the womb and females dont live past 3 in most cases you fucking douchebag

[Dawoudkhalifa]

She is such a beautiful little girl, I hope they find cure so soon.

[yenggandabae]

i also have a daughter with rett's syndrome .. she is 3 years old now .. i was so sad and cried too much when the doctor diagnose her illness .. she was 1 and a half years old when they found out that she has rett's syndrome .. her name is Christelle Verligne Catamio-Maddela live here in Philippines .. let's pray for all the girls with Rett's Syndrome they are truly an angel .. :)

[adhdandlovingit]

So sorry for your loss, she was beautiful!

youtube.com/watch?v=VqkcnrgJdw­Q

[veiledexpressions]

@adhdandlovingit

Thank you, but I assure you Ciara is still alive. :) I hope she stays with us for a very long time.

[LisaLossong]

made me cry..im so sorry

[tomken8dy]

If they've identified the gene it's possible to make a vector virus to target it with a strand of proteins to repair or replace it.

why does the process of implimentation take so long?

20 years between identifying the gene and finding a way to target it is unacceptable.

[umajunkcollector]

I featured this on my ch.

Holly is 34 now. Long ago, we lost count of:

the thousands of seziures, the trips to the hospital, the aspirations and sneezing, the choking - coughing - vomiting - reflux, wheelchairs, tube feedings, Depends (and soiled bed cleanups), Holly's cries of pain - her sufffering  and infirmery is our way of life; The PAINS, FEARS, guilt, ANGER, disappointment, false hopes, denials, doctors, and very little help or concern, even disrespect - we keep going = life with RS

[Alisen12]

She's so cute. I'm working on an essay about rett syndrome an I think this is the weirdest desease I've ever heard of. Why does something happen like this ? Well, is you daughter able to talk or walk or something like that ? And what's it like to have a child with this desease ? I'm sorry for my rude question, but this may help me with my essay...

[umajunkcollector]

@Alisen12 WHY do people suffer? To learn empathy and how to love? I used to blame myself and felt it was punishment for sins until I learned it happens to anybody. RS taught us HOW TO CARE more deeply from having an infirmed daughter. RS causes the eventual loss of ability to talk, walk, eat, and much frustration and pain (like from curvature of the spine, see my other comment for more about what it is like). RS is a heartbreaker in sooo many ways - we feel helpless and it hurts to the core!.

[lornasnail]

That made me cry i am so sorry all of you have had to go through that.

Love and best wishesxxxxxxxxxxxxxxxxxx

[Rivenga]

my name isciara :)

[lioralourie2]

I just saw several videos on Youtube about stem cell treatments for Rett's, search for retts reversal and retts before after treatment to find them. Furthermore, 3years ago, the condition has been totally reversed in mouse models, but the gene therapy/drug is far away for humans. But what they discovered is that the nerves are not permanently damaged, they can be quickly restored. Check out stem cell therapy.

[nicciTJay]

im a mother of a girl who has rett and autism, both atypical-syndrome. one hand its a difficult situation, but on the other side my daughter is  happy and friendly girl.. what live makes hard beside the things depend on her handicapped, are the people outthere. they can be so mean. sometimes it makes me even speechless. we should have learned from the second worldwar. its time for respect people as a human being no matter what handicap or nationality.

[kayneild]

my cousin ellie is 7 and has rett syndrome, she is a beautiful little girl, im currently looking into ways of raising awareness and money

[69Bittersweet]

My big sis (Maria, 21) has rett, i pray everyday for cure, i love her so much.

[Jonasgirl12Joe]

My beautiful Rett Angel Laura died in her sleep with a sezire last week and she will forever be in our heart and sh eis our rett angel who has finally earned her wings please search Laura Krivoshik on google for more information you can see her obituary or photos of hetr

[veiledexpressions]

@Jonasgirl12Joe

I believe I'm friends with your husband on facebook. I have many Rett Families added. Your daughter was absolutely beautiful. I'm so sorry for your loss.

[LuvTwilight4evr]

@Jonasgirl12Joe I am so sorry to hear about your daughter. My sister has Rett and i couldn't even imagine life without her. My prayer s are with you and god bless you

[elizabethhurst17]

how sad but can u tell me the name of the sone thanks

[PrincessSakuno]

i hope they make a cure for rett syndrome it makes me sad how some people have rett syndrome and others dont, its unfair how only some people suffer.

[headood]

I did not know what RS was. But today I learned something new. What a wonderful Angel you have.

[NBVco2]

my older sister has RS and she cant walk or talk or do much of anything but we love her so much she has toched so many hearts in so many diffrent ways and we all love her in my family

[birds16ful]

My grandma on my dad side has Alzheimer. I am the only one with a disability. My grandparents said I am a awesome granddaughter with changeling in life. My cousins on my dad side are all older then me & they say they are bless to have a special cousin like me. My cousins on my mom side are all younger then & they said you a special to us. My older sister & brother said you are a blessing to be are baby sister with Hemiplegia Cerebral Palsy

[TheSpringerlover]

your daughter is so beautiful she has the prettiest blue eyes ever good luck to you and others on reversing the symptoms

[ladyjane2001us]

All my prayers to her, I hope they will discover a cure for this disorder one day.

[birds16ful]

Can you name if you know someone with Rett Syndrome & name & age?

[rettmominmaine]

My beautiful angel just turned 7,she is going into the fourth stage,but fortunately a 24 hr EEG showed no sign of seizure,she has mild scoliosis and we are trying to get a vest for her,she has touched our lives in a way that is indescribable,The amount of love can not be measured,God Bless all of our angels and their families.

[pashminaf]

my best friend haleys sister had rett syndrome and we love her so much. she has not laughed in 2 years

[RettSyndrome1]

*has

[pinkballetdancer]

My best friends younger sister has RS. In school a few years ago I did a childcare project on her. It was so hard not to cry when i was presenting it. She is such a beautiful child. She has just turned ten. She used to have about 10 words but shes lost them all now. Its really sad. But shes such an intellegent child. i just hope that they develop this cure even if its only to counteract some of her symptoms. Xxx

[BLADEZ131313]

HI, my little sister has Rett syndrome. She is 4 years old right now. She is a handful. It took us about a year to figure out what she had, and now we have found out that she has something similar, but the exact thing. They said she had Angelman Syndrome, but now we know it is Rett Syndrome. She has seizures usually in the morning and night. She is a blessing in our home. She also has a G tube, we are talking to doctors about removing her tonsils. God Bless my little sister,God bless all of you

[Donsshack]

Holly is 33, she's been a quad for 20 years, G-tube fed for 10, I can't tell you how many seziures she's had (many-thousands), how many times she was hospitalised, gag-puking (reflux), we've changed over 36,000 diapers (crap and period too), hundreds of gallons of meds, many wheelchairs, stress everyday, many doctors and tests, back aches (from all the lifting), fears, trauma, and about all she can do now is smile and moan and cry sometimes. Our RS journey in than 500 characters, that's it!

[mamabrat2000]

My daughter is now 17 and retts. I loved reading how you said how they talk with their eyes! Boy isn't that the truth! Megan can back talk with just a look! GOd Bless you and your sweet angel.

[anto0204]

Hi.

I don't speak very weel ingleh. I am italian.

and I have sister whit Rett Syndrome. she's 10. she not speak she not walk she not eat alone and she can't chew. I am safe that here bat i want compare whit the families whit children affected by this disease.

bey bey. Anto

[matt11080]

you are truly blessed to have a angel touch your life, as I have, looks like a silent angel (rett synd). A simple blood test from both you and her will tell you.

Good luck and remember we always wish or children can be like everyone else, but don't you see she is perfect the way she is, she don't lie, hurt others nor herself. Sometimes I wish others could be a little like her!!

[vx90080]

hi, my little sister is 9 and she has retts

i love her so much but she might need to have an operation on her spine as it is severely bent. we are all at home wondering wether to have the operation because there is a very high risk that she would not pull out of the anasthetic and we would lose her.

also you said about fits, every now and again do her eyes lock and her body go into spasm? as my sister has been having them and it turned out to be distonia.

good luck with your little angel

[marshmelotz]

the tears are rolling down my face right now, i cant believe something so precious has to live with this.

first off she is beautiful, in every way, and my prayers are with her.

second off, after years of trying i had my first baby, a girl...she is now 9 months, and is developing perfectly, and quickly...

i know retts is linked to autism, i have a brother with autism, and i am sooo fearful of my daughter having retts or autism...

i cant handle this worry..

[veiledexpressions]

Autism runs in my family as well, however, Rett Syndrome is completely random. It can happen in any family. While RS is considered an ASD, it is quite different in many ways. Try not to worry. I know it's easier said than done as a parent! :)

[pashminaf]

my friend haleys sister is sooo smart but is traped in a body that makes it so she cant show how smart she is, i love her li9ke she is my sister

[guzzyron]

@marshmelotz: Genetic testing and counseling is available. Testing will involve finding out if she has a MECP2 gene mutation on her X chromosome, which is present in Rett's patients. That way you can know for sure and not worry yourself needlessly.

[babynoah722]

omgoodness Ciara Ann is such a beautiful little girl, and although living w RS she looks like such a happy child & she has an amazing family also. Just remember she is just the way she was meant to be -Heather

[suitmark]

Thank you for the video. I lost my sister yesterday and she had Rett syndrome. She was 34. Mark

[vx90080]

im sorry to hear that mark. my little sis has it and she is 9, but at least your sister is not in pain anymore...

ett

[solidrecording2012]

thank you so much for sharing did you see my little ones Ariana (same song lol) take care and god bless you and your little silient angel

The Contreras Family

[linkelii]

hermoso

[kristineveritt]

This video broke my heart becuase I have all of the same pictures, my daughter looks exactly like yours, she lost her skills very early. My Emily is 5 now, this video is very well done, it captures it so well!

[ladytnfred]

I love your viedo. The song you pick is perfect. I work at a preschool for reg ed & special ed children in salem va. I have been VERY BLESSED this year to work with a beautiful,smart,loving girl who has retts.Let me tell you she has taught ME some much about life, love, acceptance,patience,& giving.She may not be able to use words,but her eyes tell me A LOT!! I've learned to know what some of her needs are by just listening to her sounds. I pray they find a cure for all your daughters .

[crystalm1476]

Beautiful daughter, beautiful video!!

[57waldo57]

i actually cried when i seen this.

god bless

[patyrish]

AWESOME video. She has GORGEOUS eyes and you are right they say SO MUCH. Her hands folded together remind me SO MUCH of my Makily...she has the same hand movements.

[Mama2missK]

Beautiful video! Very informative, thank you for making this.

MamaK

[ButlerCrew]

Beautiful video, your daughter is beautiful! My daughter Brooklyn is 2 (RS)

[BranMan74]

Jenn, that's a great video - thank you for making it.

Katie - starfish422

[Jennah555]

Very touching!