RETT: There is Hope (Full Movie) 

Yes, we can hope. My granddaughter just turned 18, this is a heartbreaking disease. She was diagnosed with PDDNOS/autism, but a few years ago tests showed Rett. She is my heart and her parents amazing. God bless your family and your precious daughter.

God bless you and God bless your sweet baby

Yes I agree. Who came up with the idea of putting music in videos. !!!!!!!

I completely agree

TotalTruth .ca I think that the thumbs down probably means that it makes them sad or they mean that it isn’t a happy “thumbs up” issue.

I don't thumbs up sad videos/situations. But I don't thumbs them down either.

I think it's also partially because people don't like how loud and annoying the music is. They're disliking the editing, not the content

People give a down vote for many, many reasons. Frequently it is for inappropriate background music for example. It isn't personal and it isn't about the sick children. As a society, we need to grow thicker skin.

How do you know the number of thumbs down. It only shows thumbs up on my device. It was an excellent podcast on a very emotional subject. Those wee children, parents and researchers humble me with their unconditional dedication ❤❤❤

I'm so sorry for the loss of your little girl. As a daddy of 6 girls I couldn't imagine the pain of losing a child. I sincerely hope a cure is found and soon. Too much emphasis is placed on profitability of treatments and not enough on cures especially of fairly rare diseases or mutation or syndrome. This is something in desperate need of drastic change. No parents should ever bury their child. My profound sympathy.

So sorry about your daughter. ❤❤🙏🙏

Sadly I think you are wrong. Because it is a genetic condition I doubt it will be curable

Jan Filbeck When people want to edit your observations, I understand it's difficult, but your not doing your child any favours. Professionals should be able to be honest, otherwise you are just massaging away a parents hurt.

It hurts so much.

I’m so happy 😊😊

Alex Maldonado that is awesome your daughter can do so much! It sounds like she might have Atypical Rett. Because she can do so much more than someone with Rett. It really sounds as though there will be treatments and even a cure in the not-so-distant-future. And because your daughter already walks and has a lot of function, she won’t have a ton of rehabilitation and physical therapy when the treatments and cure comes.

You could watch this video of another rett's parent and see if this might be an option for you. ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-aalSwR2IwC4.html

Damn. I’m sorry for your troubles. Best of luck to you and yours.

Sending my thoughts and prayers to you and your family! I can't even imagine what it's like but as a mother myself I feel for you!! All we want for our children is for them to be healthy and happy!! Stay strong and keep your head up!!

dont let her suffer anymore.go to switzerland

OMG daughter has Rett she is now 49 years old

@@jacquelynnscotney43 jlook

@MacKinley You clearly did not listen to any of this video! Retts IS a genetic disorder, the mutated gene is MECP2. Sick and tired of people simply not listening and then spreading misinformation. 🙄

@MacKinley yes it is. Please watch again yet listen this time

@Antonia Bareva you didnt listen very well

I noticed that also

What’s your child’s name I will pray for her?

Always feel bad for the siblings, like the little girls, one performs a song for the camera and when she's finished mom asks hannah what she thought if the song instead of commenting on the performance by the " normal " child

absolutely.

That was my first reaction - that the siblings are so supportive and nurturing. That gives me hope.

It's been a while since you commented, but Rett Syndrome is not associated with hormones - the reason why they're almost all girls is that boys usually die in the womb.

Most of these kids have not hit puberty...

@@vstr4276 no it's because of the chromosomes not hormones. Boys have XY chromosomes, girls have XX. So when the girls have 1 damaged chromosome, the other healthy one can compensate some. But boys who have an affected chromosome don't have a 2nd X, hence why they can't survive - they have no healthy backup

@@unknownentity7964 Actually Boys are XY and Girls are XX.

@@1houndgal thanks for the correction, I don't know how I got mixed up when explaining it! I corrected it now

is it a special one ? , if it’s available online could you please send me a link if you know or something , I would be so grateful

Tttrrtt

i know Im asking the wrong place but does anybody know a tool to log back into an Instagram account?? I was stupid lost the account password. I would love any tricks you can give me.

@Erick Levi Instablaster =)

How about 54 years ?not knowing! Our sister has Rett syndrome, something I have just found out after reading a near death experience account by a father whose daughter is afflicted with it.

Boys are usually more severely affected than girls- if they live at all. I worked at an institution in the late '70s. There was a young teen who had Rett Syndrome. Her brother had it too, but died soon after. She lived longer and while she could no longer talk, she could still walk and follow some directions. She did wring her hands a lot. I hope the most that God will take care of her family, even if she's no longer with her family, wherever she now.

dreas mom People don’t hurt less because they have money. Their children don’t suffer less.

dreas mom ...wow...that was rude......a child is a child no matter if they have money or not.

well the thing is if u have money u can get better medical treatment.

I would describe the noise as horrendous How unnecessary it is Takes away from the video which is excellent

היילי מור I

I believe there are many things that haven't been discovered. This is interesting to me. The workings of the brain has not ever been unraveled. I believe God doesn't give you more than you can handle. I speak as one who has been there and done that...

Yes. I found it hard to focus. To much audio input.

Christine Still ... My thoughts too 👍

I just noticed the music when I read the comments, lol. Interesting how minds work 🤷‍♀️😊

I hadn't noticed it till you mentioned it 😣

@@DarkStarHearts I noticed it but didn't REALLY notice it until the comments. Lol

She reminds me of Vada from My girl.

sylvia koziarski ... My thoughts too, music very distracting

Yes, why do they ALWAYS do that?!

I wanted to watch it, but about halfway through I couldn't finish with the music. They need to stop this with these important subjects.

Some of them I cant hear the voices over the music!!!

I think the music suited the theme

My daughter's best friends little brother has Rett syndrome as well. We live in Southern IN.

22,867 views now...thank you for posting this inspiring video. Peace & Love

If only the girls were mice! I'm not getting the connection myself as the science on the mice can not be progressed to human trials.

redfog42 seriously? Do you know HOW much science has been discovered and trialed in MICE and then moved over to humans? Endless! Come on!

No, a whole lot of Rett girls have nothing close to normal intelligence. I think that is wishful thinking among some parents. I am a Nurse for a girl with Rett. Her mom told me she has perfectly normal intelligence. It has been my observation she does not. She only watches Teletubbies. She’s 16 years old. And she doesn’t seem to care about whether there’s another person around or not. She never smiles or makes any eye contact. She’s in her own world.

@@katrinaolsen2444 wait, how do you know what she wants to watch? maybe she wants to watch something else...

torako I know that’s all she wants to watch because I have tried a lot of different shows. And she ignored them or cried. She only stopped crying when Barney was put on. Even her mom said that the way to get her to stop crying is to put on Barney. How is it known that most girls with Rett have normal IQs? I have read that in some writings about Rett. But I’ve also read and watched doctors, in videos, who think that there certainly are girls who have normal Intelligence. But they also believe there there are girls with Rett who are severely, mentally challenged. And girls with Rett who fall somewhere in between. I’ve read a lot of posts from parents who wrote that their daughters were severely mentally challenged. And that they didn’t do much other than act like they were frightened and scream. There were a few different parents who posted that. And their daughters had passed away in their mid-twenties. I did some looking around about how many girls with Rett could talk and why. I tried to find the page again,just now, and I can’t. Grr! But from what I remember, it said that the girls with Rett who were able to hold on to their speaking ability, what seems to be the biggest factor; none of the girls who could speak had Microcephaly. I also read that unlike people with Autism, girls with Rett would look people in the eye. And they wanted to have people around and be social. That doesn’t seem to be the case with my patient. On the rare occasion she will look me in the eye. When I dress her I always smile and talk to her and try to get her to smile and giggle. That’s the best when she giggles! She doesn’t like having her shirts taken off or put on. So I really try to get her smiling and in a great mood so she barley notices when I have to take off her shirt and put a new one on. For awhile her mornings were miserable because I had to give her breathing treatments and do the Chest Vest. She would be so angry and scream or cry afterwards when I dressed her. I was able to get her to stop getting angry by apologizing to her about the chest vest and that it was her mom that told me to do all of this. She looked like she understood and she stopped getting angry and screaming/crying. I told her mom about my strategy and she laughed and said that was good thinking on my part. She loves her mom and I knew she wouldn’t get angry at her. I don’t know if my patient was social in the past. But she doesn’t seem to be now. I also think that it IS absolutely possible that she has features of someone with Autism, only likes to watch Barney, presents as though she is intellectually challenged, BECAUSE she is so locked in and can’t access very much, because she has Rett. And that when there is a drug/treatment/vaccine that eliminates Rett, and she isn’t locked in, she will be absolutely normal. I pray that is what happens. As it is now, she cannot communicate with the Tobii. Her mom told me that she does book reports and all kinds of school work on the Tobii, when I first started. I believed her. However I started to have doubts because I asked her to look to the side to answer “yes”. I tried both sides and talked to her mom to find out which way(s) she could or would look to answer questions. And that ended up not working at all. And her mom doesn’t communicate with her by asking her questions and trying to interpret what she wants. She just tells her what’s going to happen or where she’s (either her or my patient) going. EA couple of months ago, there were 3 new nurses hired. They were for very few hours and if one of the full time Nurses called in sick. My patient was extremely upset. Her mom couldn’t decipher or figure out what was bothering my patient so much. She asked that my patient’s Tobii /Communication Specialist to bring a Tobii to find out what was making her so upset. And my patient couldn’t communicate at all. My thoughts were that in my patient’s case, her using the Tobii for “book reports”, tests, and other written assignments were unconsciously made up, or if it was a test, answered by whoever was with her while she was supposedly doing schoolwork. Like 30 years ago when it was thought that people with Autism could communicate by directly looking at typewriter and the teacher, parent, or “Communication Specialist” would press the typewriter key that they were looking at. Parents were overjoyed that they could finally understand their children with Autism. As it turned out, when they covered the eyes of the person typing and asked the person with Autism questions. Then the person with Autism was shown the answers (while the person who typed for them was blindfolded). After that the person with Autism and their Communication Specialist took the normal position they used. And the Person with Autism was asked the same questions. The Communication Specialist typed the answers given to them by the person with Autism. Only the answers that were typed, were wrong. Every time. And it was figured out that the person who typed was unconsciously answering the questions. I think that’s what’s happening in my patient’s situation. Only when peo Communication Specialist was asked to figure out what was wrong, she wasn’t going to make up something this time. It would mean risking their job; because if they wrote something, it would be discovered fairly quickly that it was a lie. Anyway, that’s just my opinion. Take care.

Cindy Donaldson Its saddening that they are trapped in a body that gets worse whither the girls are beautiful or not.