RETT: There is Hope (Full Movie)

[@LightYearAway-861]

My 3 years young daughter was diagnosed with Rett syndrome yesterday. For the last 2 years the doctors told us she had autism. I hope and pray that one day there will be a cure for her and for all the Rett children to have normal and healthy life. I am hopeful and will never give up on her.

[@Watching4]

God bless you and God bless your sweet baby

[@TotalTruthca]

As a mother of a Rett girl I am very disheartened to see that there are 36 thumbs down....But that aside thank you so much for this movie, it brought me Hope, and I too have gotten on board and helped raised funds for Rett Research...our Rett girls deserve our support !

[@Manifestt-ee5iz]

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.

[@nilsnyman6767]

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

[@vw7567]

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

[@kristinebailey2804]

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.

[@AB-re1qs]

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 ❤❤❤

[@radixdudette]

Wonderful information on an orphan genetic disease. What brave parents! The too loud pulsating music is a distraction to hearing the important dialogue.

[@judydoucette423]

Thank you for sharing. My niece with Rett is 40. She has never had language. We were told she probably wouldn't survive through adolescence! She can still walk, however, not for long periods. My sister and brother in law are angels. They're life is caring for her, Rx, seizures, daily care, bathing, dressing, feeding, taking care of her every need. They make sure she is 'pretty', using ribbons in her hair and cute clothing! She is so well cared for and loved. It is my opinion, that's why she's living with Retts at 40!

[@jacquelynnscotney43]

OMG daughter has Rett she is now 49 years old

[@annelackner750]

@@jacquelynnscotney43 jlook

[@kendrawhittaker4855]

I studied Rett syndrome in school, but this video has helped understand so much more. My heart and prayers go out to the families of Rett children. I believe a treatment can be found.

[@mollyhorse]

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

[@janfilbeck6376]

"Hurrah" for the parents in this doc about Rett Syndrome! Sadly some parents are overly protective to a fault and look for "threats" from caregivers. In Florida a school nurse who worked with special needs kids was forced to resign because a student with Rett's dad, a local newspaper editor, had erroneously misread a comment from the nurse and believed she had threatened the girl! It was such a loss to the school: this nurse was a real advocate for persons with disabilities. Remember, if you are a parent of a child with any syndrome please be kind to those who dedicate the lives to making this world a better place for all children. Blessed be all!

[@jenniferholden9397]

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.

[@depmodealex]

My 7 year old daughter was just diagnosed with RETT...we are blessed in that she can walk, talk at about a 3 year old's level, eat normally, she doesn't have seizures, she knows about 200 sight words and is actually starting to read on her own, by blending sounds that she's learned. She is however severely delayed, she does wring her hands, she can't fully dress herself, brush her teeth, and has issues with bruxism. But this diagnosis hit us like a ton of bricks...every specialist we saw said it was autism but we knew it wasn't. We finally did a full genetic test and found this out. I'm so glad to see that there are people working to reverse this awful condition. We have a clinical trial that's currently taking place near us that we want to get her involved in. God bless everyone who is working so hard on this.

[@konjurekatrina]

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.

[@amandarios448]

You could watch this video of another rett's parent and see if this might be an option for you. kzbin.info/www/bejne/l5LPhKqIZ66qeZY

[@7thMack]

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

[@sweetbeeluvera1450]

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!!

[@abab-gj7mm]

dont let her suffer anymore.go to switzerland

[@deboracarroll6083]

My daughter with Rett Syndrome died two years ago at the age of 34. I hope for the cure for the other families.

[@ScottBeck-hk2lq]

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.

[@lafaynecallahan7189]

So sorry about your daughter. ❤❤🙏🙏

[@yutrayudi8203]

Im the father who had daughter with rett syndrome....she 10 years old now....thanks for sharing this video....

[@irenemesecke3076]

What fabulous parents, plus the wonderful siblings, and those dedicated peoples who assist in there exercises, and bring the world to her. The love that surrounds them from the loved ones is so glorious.

[@jeanettejones5183]

I’m so happy 😊😊

[@jessiewelch8726]

You families are so strong, brave and I hope that there can be a cure for your little ones ❤️ my youngest daughter has a rare genetic disorder and it’s so hard as a parent because you don’t want your child in pain, struggle through activities etc. There’s so much that is taken for granted in life until you’re living with someone who you are grateful for if they can do even one of the simplest of things in life.

[@chaisofresh]

My sister was diagnosed with Retts and it has altered our lives in our family but she will always be within our care. I hope one day we can find a cure for this disease.

[@glynisansara]

I salute the incredibly courageous and loving parents and siblings of the Rhett girls in this film. If annoying music is a big thing in your life you are a fortunate person.

[@emilya2009]

I am in grad school for Speech-language pathology and I was assigned Rett's syndrome. I'm so glad you shared this and that the parents shared their story. This has given me a perspective into the lives of children with Rett syndrome and their family's journey. This video has inspired me to learn more about therapy practices and speak to my friends and family about this syndrome. Thank you!

[@pennylane77]

This is the first time I've heard of this awful condition. My heart goes out to the families. Pray they find a cure soon.

[@karenacton3854]

Thank you for sharing this and helping others understand. For me the eyes speak volumes, looking into their eyes shows their love and every other emotion they are portraying and want others to see. These parents are amazing and so strong. I didn’t understand what Rhett was and never understood the severity of it until Hanna’s mom said...”I want the autism diagnosis back.” That seriously broke my heart. I wish every parent the every best in your journey and keep the faith, they will find the cure.

[@margaretcooper797]

What a heart break for the parents to witness the deterioration of their lovely little girls.Your best is behind you,so very sad.

[@d.michaud1606]

All of these girls have amazing eyes . You can see them in their eyes . Their courage . Their obstinance . Their joy . Their fight . Their love for their family . Their intelligence. I hope I see them again when they figure out how to flip that switch on .

[@mosaicgirl4002]

Lovely comment- me too!❤

[@lisamcilvainartpage8838]

Hats off to Monica whose made it her mission to research this horrible syndrome. And Dr. Adrian Bird for his miraculous discovery. With enough money for funding it seems like an attainable goal, reversing the gene. My hearts go out to these families and those beautiful girls. I wish nothing but health and peace for them. ❤️

[@jewelseasterman8328]

My love and prayers goes out to these parents, siblings, and daughters all alike. Thank you families for sharing your journey, which is a tough journey to say the least!

[@lynnmcwilliam708]

Your story of Hannah's early life and eventual diagnosis mirrors ours so very much. Very moving. She is a lovely child.

[@jailahbryel305]

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

[@kschallert3569]

Such incredible families. I love the two brothers, so loving, so sweet, especially the youngest brother. They probably realize that the character building in the siblings of Rett Girls is incredibly important. These siblings will make this world a better place, as their parents already are. Bless every one of them.

[@jojocrawford1]

absolutely.

[@brianarbenz1329]

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

[@gloriadavis1158]

My great niece died of this last year just after her 18th birthday. She was never able to walk or talk and had a feeding tube very young. She was beautiful and had a wonderful smile!

[@kathleenstrodtman1542]

These families are amazing as are those who tirelessly strive to find a cure.Sending love ,hope and prayers for these little angels .

[@melaniewalker5226]

That was very sad but at the same time all the parents are amazing and I hope that cure is going to come soon.

[@hyenya2958]

This is like a life long genetic version of locked in syndrome. They can't communicate with the world yet they can still understand everything. It's quite upsetting

[@EdgyMTB]

@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. 🙄

[@eileenmcdonald1599]

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

[@eileenmcdonald1599]

@Antonia Bareva you didnt listen very well

[@caidyc]

My love and respect for these wonderful parents and their beautiful children. Thank you for sharing your stories.

[@troydaigle1260]

Thank you for making this documentary so that others can understand this problem. God Bless all people with this.

[@taleandclawrock2606]

I have cared for those with neurodegenerative disorders, and seen first hand the profound and ongoing family grief of seeing a loved one losing capacity, recovering unexpected skills, only to be losing even more, plus the massive and life changing impacts of having to reform their lives around the intensive care of their loved one. I pray that scientists, doctors, universities and philanthropists focus their fullest efforts on finding cures for such devastating and costly conditions, their efforts have the capacity to heal so many lives and reduce untold suffering.

[@PureXLR8tion]

I hope scientists continue receiving funds to find the MECP2 link to reverse this syndrome.

[@rebekahfamily2215]

My brothers girlfriends daughter has Rett syndrome. She’s only 4 years old. I always worry about her because she’s so fragile. I def hope we can find a cure

[@RenegadeTimes]

Loving incredible parents. THIS is what true love looks like.

[@elucas30345]

Tttrrtt

[@ericklevi9735]

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.

[@levilance7049]

@Erick Levi Instablaster =)

[@sylviakoziarski4912]

I don't know about you, but, I would love to listen to a movie without the background noise, music. A good video all the same.

[@yasmineprasad147]

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

[@kw5839]

Yes, why do they ALWAYS do that?!

[@peggystoutemorin4529]

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.

[@angiefeingold8174]

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

[@jimmyt5690]

I think the music suited the theme

[@melissahodges6682]

My 11 year old daughter to have rett syndrome. I pray every day that we can come up with a cure. But after watching these movies of rett. I do know how all these families fill and going though. I want to give thanks to all the people that are trying to find a cure for rett syndrome from the bottom of my heart. THANKS TO YOU ALL AND GOD BLESS YOU

[@QuietBloom]

These are some extraordinary sisters and brothers.

[@regangrant1337]

Horrible, distracting background music... But an incredibly interesting film nonetheless. Thank you for this enlightening documentary. I know one day research will develop a way to further benefit and improve the lives of all who struggle with Rett Syndrome. Bless the children💖💕

[@illbeyourstumbleine]

My daughter's best friends little brother Hunter is one of the only boys to have Rett's. Unfortunately his case is very severe and they spent all of last year in the hospital. He has never been verbal and has always been in his wheelchair. It is very heartbreaking to watch him and his whole family go through this. Because he is a boy he wasn't diagnosed until around the age of 10. Imagine going 10 years without an answer on why your child is so sick...just terrible.

[@polambrossi]

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.

[@virginiaconnor8350]

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.

[@bayoulafourche]

So hard to watch these beautiful children and caring parents go through this. I have two adult sons with schizophrenia. I really thought the world had given me a raw deal at first, but after watching this, I think we just never know what other people have to go through. My heart breaks for them.

[@OpalAllen-j8r]

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...

[@victoriapowell100]

I didn't even know what rett syndrome was until now and I'm 48yrs old!! Wow!! The families that I'm seeing on here are so strong. These girls get so much love and they also give so much love. I hope one day soon these scientists can pinpoint the cure for this dreadful disease. You are all in my thoughts.

[@gillianhamilton6535]

Hope for these lovely children, all my prayers for them. Bless families living with Rett.

[@sandycoponen4561]

Would any of these parents consider talking to their neurologist about the effects of the child's hormones in regards to the seizures? We took care of an adult who had grand mall seizures at least 5 to 10 per day, until I kept a record of her menstrual cycle and found the seizures were more frequent around the high point of her cycles. The doctor agreed to remove her female reproductive system. And within 2 mths her seizures reduced to 2-3 per month .

[@vstr4276]

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.

[@lollipopknox]

Most of these kids have not hit puberty...

[@unknownentity7964]

@@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

[@1houndgal]

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

[@unknownentity7964]

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

[@daveysodyssey9990]

Her brothers are true guardian angels

[@GOGOSLIFE]

It`s frustrating that a cure is so close, but it`s just out of reach of your fingertips. Bless these parents. I would`ve done the same if my daughter were so afflicted. You just don`t give up on your children. If you did, just imagine what these kids would say to you, if you gave up on them. They`re still in there, but they can`t get out. Just love them, that`s what children are for. Peace

[@WendyBeasley-l7v]

I'm a parent of a 10 year old male with RETTS and I feel your pain.. thank you for sharing.. .

[@Opalbird1]

There’s a girl with Rettsearch syndrome in my city that uses a computer to communicate. It’s wonderful for her

[@omniahesham8436]

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

[@sandracmyers]

Oh you beautiful people...I'm praying for you all....

[@Dmhlcmb]

What a miracle it would be to see a sequel to this video with all these poor girls telling their own stories. I’ll be praying.

[@christinestill5002]

Music becomes annoying after awhile.

[@JasonX00]

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

[@yasmineprasad147]

Christine Still ... My thoughts too 👍

[@DarkStarHearts]

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

[@cloudie8314]

I hadn't noticed it till you mentioned it 😣

[@nincure]

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

[@YackBackatcha]

Don’t lose the other daughter too! Pay attention to her normal development.

[@Hank760]

I noticed that also

[@elmienliebenberg9145]

When the interviewer asked "What happened after that?" The mom's face.....she went from talking about the amazing moment her daughter was born and the amazing relationship her daughters have to the memory of how Hanna started to show symptoms. It was like the wind being knocked out of her. I don't think it gets any easier. My heart broke for her 💔💔

[@nannettepeel6788]

It is extremely sad that the reason the young girl from the first family can walk and talk, is probably due to their ability to initiate and pay for therapies at an early stage. If only that were the case for all of those in need.

[@christinestill5002]

I found the background "music" VERY ANNOYING & unnecessary ! Cloying techno-noise. Shame!

[@brendahinnells]

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

[@brendaseager7371]

This is one of the most horrid syndromes I have ever read, heard or seen in documentaries, and yet I have never heard of any fundraising or causes ever. When cancer first became such a big killer of so many people, it took one person to decide he was going to make world wide awareness of this disease and fundraiser to discover a cure! Sadly he lost his fight but, he succeeded in raising awareness and money to search for a cure, we need awareness of this horrible disease as cancer received. These are our children that is having their future taken away from them so I pray research finds a cure but, money is still needed. Please open your eyes, your hearts and your wallets to help these children.!

[@Dexy83]

I'd love a 4+ year update on the current state of affairs in Rett research.

[@Jays.Rett.Journey]

I remember researching and also saying that.. “oh no It’s not this! This is worst case scenario!” & when they called to give me the results I asked “is this the one that involves regression!!?” .. life has never been the same since that day

[@irenefeltham8984]

These Parents are all Beautiful Inspiring HumanBeings - I am in awe of Their example and courage Blessings💗✨🌹🙏🏻👼

[@graceyoung3771]

I just happened upon this documentary with the surety I would be quickly moving onto the thing. This is so well done. I am not a scientist but I have personal experience with seizures themselves, they alone can rob you of your memory and motor skills depending on how severe they are. How it would be connected to autism is doubtful in my mind. Still show is spot on and have enjoyed every minute.

[@abuaadam6038]

Thank you very much for sharing this video

[@groovyangel6550]

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

[@margaretmumford147]

I'm sort of glad you have your darling child, my child died, and I feel happiness and jealous of every one. I hope you are not cross with me I wish my son was here in any form, forgive me for my sadness for your lives, I want my boy back to say ilove him. X

[@carolyndavison6095]

We should all be extemely grateful if we had healthy children. These parents are so incredibly strong in dealing with this tragic disease. When people make videos like this you learn so much about rare conditions. It would be so helpful to stop the very disturbing background music. It's much too loud and I have trouble hearing the dialog at times. I find this happens a lot and is very distracting. God Bless all parents who care for these precious children. Praying for a cure.

[@wendybanuelos2310]

Love you’re story ❤️ The doctor just told me my little girl has Rett síndrome ☹️

[@やぶさおびなた]

The brothers are sweethearts.

[@amberlinmchugh8115]

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

[@judithwerner5301]

Such a wonderful little girl. I'm so happy that she is surrounded by love.

[@dreasmom2789]

I feel for all families with Rett. Feel even more for the families with Rett and not money like this family.

[@QuietBloom]

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

[@jetvaughn3683]

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

[@donnyreiss1180]

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

[@feralbluee]

these videos are very well produced and important. i’m so interested in the research for this, and it’s amazing how much they have learned. the thought your child is locked up inside herself, must be devastating. But, just a note to producers of these videos - the constant music towards the end, its high volume, and the repetition of phrases over and over, and over, is very, very annoying and distracting. i don’t know why you even need it - and if you do, please lower the volume so it’s way in the background. if anyone is listening to me, thank you much. have a good day. 🌷🌱

[@alexascartier617]

6 min and 30 seconds I'm balling my eyes out those exact words that just happened at my daughter's genetics appt when she said testing for rett I said no I have read about that and always told my self no matter what is wrong at least it's not that. I can handle autism I have been researching things for autism and it cannot be that cried and cried and I'm still crying

[@kieshaannpetersen9854]

Thank you so much for this video ❤

[@theresabraddock9310]

unnecessary background music while the people are talking

[@gretchenlhommedieu9246]

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

[@ummuanas377]

I completely agree

[@j.b.4340]

Not nearly as bad as your unnecessary comment.

[@StephanieJoRountree]

4 years later since this video was uploaded. Any progress in the cure?

[@carolglowacki576]

I am donating now. This is exciting to know it could be reversed. I will continue to pray and this could be the answer.

[@jeanniehargis4034]

Such beautiful children and such amazing families!

[@jeanniehargis4034]

Why do you play the awful noise in the background? Very distracting,

[@tammybriscoe9240]

I find the music comforting

[@RebornAgain2024]

I make reborn dolls. I only sell them so I can make them. Having 100 babies around my studio does not make sense. I am going to donate every dime I make to Rett. If this can be reversed not only is it a miracle but I am sure it will open avenues for other maladies of this nature What truly blows me away is how stunning these girls are

[@malinlindqvist3455]

Incredibly interesting video, but that plunkinng and plonking background is enough to drive you nuts!!!!

[@virginiasoskin9082]

I agree. I almost turned it off because the music was too loud and repetitive. Otherwise, a very informative video.

[@היילימור-ר1ז]

It’s a very cruel disease, the children seem so frustrated, locked up in their bodies

[@kathyhurst3612]

היילי מור I

[@sandornefodor3194]

They are lovely! We live in Budapest, Hungary. Our Fannia also suffers from Rett syndrome. 24 years old. I will follow your research. I love you ! Fannika's mom

[@isabellenicaud3725]

Those lovung parents are warriors

[@flutterby1979]

My son has the MEC-P2 Deletion! They are finding more and more boys with it!

[@illbeyourstumbleine]

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

[@cutechiangels]

Thanks for this documentary. All rare syndroms and diseases are very disarming and difficult to live with, daily. I know all about that. But, these parents are such wonderful parents to have, when having the illness. Not all parents can cope with any type of aliments their child could have. Let alone such a handicapping one. Don't give up, in this case (Rett Syndrom), it will be able to be reversed some day. Take care.

[@Jays.Rett.Journey]

This is the same exact situation with our story.. no one would listen.. during my own research I found a Rett video and said “no!! This is worst case scenario!” Then after getting her diagnosis, I went to look into more info and saw the video I initially saw, and saw exactly where I stopped it that 1st time 😢

[@alohacountry4556]

PLZ update where the research stands today ❗

[@harrietmatthee9865]

Greetings from Cape Town..sending much Love and Light to all the beautiful Souls.in the Movie..be Blessed Special Souls..Thank you

[@MegaKaylicious]

I love how the fathers are so hands on as well

[@elisabethbucher7399]

Great film. Thank you. I had a girl with this syndrome in the special ed class I was relieving yesterday. This film gave me more insight ❤

[@PMaillet]

Why do they make such a good video with such annoying background - they'd say music - it's actually noise.

[@bentleystoybox6145]

Thank you for sharing. You have a beautiful family. I can feel the love. Thank you for teaching me about Rett. I will be teaching my family as well. Thank you.

[@darladelahunty4025]

Excellent information, exciting possibilities, and inspiring hope. But, that derned music is so loud thru most of it that it is hard to understand the speech!!

[@sophroniel]

my heart goes out to these families and girls, and I hope they are ok today.

[@staybent9380]

Chelsea's brothers are amazingly loving.

[@Naturelover2]

The monotonous music in the background spoils this interesting documentary.

[@darcyrheubottom8650]

A well done , informational video.I pray that you will raise the funds to further the research .I worked with a few girls who had Rett syndrome way back in 1989 when there were only a handful of girls in the world who were diagnosed with Rett Syndrome.Years later , I became the parent of a special needs child myself.I fully understand the passion and determination to do anything and everything to help our kids live happy lives, free of pain and suffering.As a fellow " Mama Bear", I commend these parents for participating in making this documentary in order to help all people who are affected by Rett Syndrome.Public awareness brings change.Donations give many families the hope they need to keep pressing on towards their goals. I truly believe that these children are our greatest teachers of the very thing that is the most important of all : pure, unconditional love.My child has given me more strength, more compassion and a deeper love for all people .He is my personal hero and I thank God for him every day 🙏🙇 God bless you all 💙💚💛❤💖

[@vrediana]

It is known now that most of the Rett girls have normal IQ so I do hope that their parents do let them communicate by alternative communication like with autistic people. The scientists managed to stop RS in mice and even reverse its symptoms! I hope they will do it in people soon!

[@redfog42]

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.

[@justmeashley7923]

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

[@katrinaolsen2444]

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.

[@torakokoneko]

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

[@katrinaolsen2444]

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.

[@angelnetwork7428]

Excellent Story, Great Parents & Children. Yet as a sufferer of Several Neurological Illnesses myself.. The background music is unbearable & sooooooo Annoying. As it is all you hear at stages....Everyones mouth is moving, but all im hearing is the most grating & irritating back ground sound , cant call it music..

[@melb3323]

music is too loud!!!!!

[@bass13mary]

My son is going blind. I agree that dealing is tough. They just have a lack of experience telling people bad news.plus they get yelled at a lot. We go to a world known eye center. The doctor is brutal on these kids. Embarrassing them but they take it.

[@teresareynolds2879]

My aunt went undiagnosed. She started developing then went backwards. Just like this. I think this is what she had. They thought maybe cp but this is exactly what happened to her.

[@randomvintagefilm273]

I wonder if Medical Marijuana would help the tremors, it does in seizure patients and many other afflictions

[@lilliantrevino6940]

Maybe it will cure it.

[@amandarios448]

I wonder... Usually MM is good for "overactive" cells, ro put it roughly... It allows for apoptosis in cancer, those are all overactive, longer living than normal cells or function & seizures are also uncoordinated firing of the neurons. I wonder if rett is autoimmune or one of those overactive diseases because then it surely could help. That's my 2 cents. I researched MM in healthy subjects, it acts different in other types of physiology like of those who are sick.

[@amandarios448]

I actually found something, so far MM had mostly to do with reduction of seizures reductio and better sleep kzbin.info/www/bejne/l5LPhKqIZ66qeZY

[@nincure]

Was thinking the same.

[@Jim1971a]

After all of these specialists, a resident nailed the diagnosis.

[@היילימור-ר1ז]

What supportive brothers amazing they r