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 Жыл бұрын
God bless you and God bless your sweet baby
@radixdudette Жыл бұрын
Wonderful information on an orphan genetic disease. What brave parents! The too loud pulsating music is a distraction to hearing the important dialogue.
@TotalTruthca5 жыл бұрын
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-ee5iz5 жыл бұрын
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.
@nilsnyman67674 жыл бұрын
I don't thumbs up sad videos/situations. But I don't thumbs them down either.
@vw75674 жыл бұрын
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
@kristinebailey28044 жыл бұрын
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 Жыл бұрын
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 ❤❤❤
@deboracarroll60834 жыл бұрын
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 Жыл бұрын
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.
@lafaynecallahan71898 ай бұрын
So sorry about your daughter. ❤❤🙏🙏
@kendrawhittaker48554 жыл бұрын
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.
@mollyhorse2 жыл бұрын
Sadly I think you are wrong. Because it is a genetic condition I doubt it will be curable
@janfilbeck63767 жыл бұрын
"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!
@jenniferholden93975 жыл бұрын
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.
@judydoucette4236 жыл бұрын
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!
@jacquelynnscotney434 жыл бұрын
OMG daughter has Rett she is now 49 years old
@annelackner7504 жыл бұрын
@@jacquelynnscotney43 jlook
@yutrayudi82034 жыл бұрын
Im the father who had daughter with rett syndrome....she 10 years old now....thanks for sharing this video....
@depmodealex6 жыл бұрын
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.
@konjurekatrina5 жыл бұрын
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.
@amandarios4485 жыл бұрын
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
@7thMack5 жыл бұрын
Damn. I’m sorry for your troubles. Best of luck to you and yours.
@sweetbeeluvera14504 жыл бұрын
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-gj7mm4 жыл бұрын
dont let her suffer anymore.go to switzerland
@irenemesecke30765 жыл бұрын
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 Жыл бұрын
I’m so happy 😊😊
@jessiewelch87262 жыл бұрын
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.
@margaretcooper7973 жыл бұрын
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.michaud16067 жыл бұрын
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 .
@mosaicgirl40022 ай бұрын
Lovely comment- me too!❤
@MarilynUK24nanaZ20 күн бұрын
Oh wow ,I thought they were all pretty girls with beautiful eyes and smiles too , I can’t say anything more than you said . Hope an amazing breakthrough for treatment / cure is found soon .
@karenacton38544 жыл бұрын
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.
@glynisansara4 жыл бұрын
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.
@emilya20097 жыл бұрын
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!
@jewelseasterman83284 жыл бұрын
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!
@pennylane775 жыл бұрын
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.
@chaisofresh7 жыл бұрын
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.
@lynnmcwilliam7087 жыл бұрын
Your story of Hannah's early life and eventual diagnosis mirrors ours so very much. Very moving. She is a lovely child.
@jailahbryel3054 жыл бұрын
What’s your child’s name I will pray for her?
@lisamcilvainartpage88382 жыл бұрын
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. ❤️
@kathleenstrodtman15428 жыл бұрын
These families are amazing as are those who tirelessly strive to find a cure.Sending love ,hope and prayers for these little angels .
@gloriadavis1158 Жыл бұрын
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!
@kschallert35696 жыл бұрын
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.
@jojocrawford15 жыл бұрын
absolutely.
@brianarbenz1329 Жыл бұрын
That was my first reaction - that the siblings are so supportive and nurturing. That gives me hope.
@RenegadeTimes6 жыл бұрын
Loving incredible parents. THIS is what true love looks like.
@elucas303454 жыл бұрын
Tttrrtt
@ericklevi97353 жыл бұрын
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.
@levilance70493 жыл бұрын
@Erick Levi Instablaster =)
@hyenya29586 жыл бұрын
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
@EdgyMTB5 жыл бұрын
@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. 🙄
@eileenmcdonald15994 жыл бұрын
@MacKinley yes it is. Please watch again yet listen this time
@eileenmcdonald15994 жыл бұрын
@Antonia Bareva you didnt listen very well
@caidyc4 жыл бұрын
My love and respect for these wonderful parents and their beautiful children. Thank you for sharing your stories.
@やぶさおびなた6 жыл бұрын
The brothers are sweethearts.
@amberlinmchugh81154 жыл бұрын
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
@melaniewalker52268 жыл бұрын
That was very sad but at the same time all the parents are amazing and I hope that cure is going to come soon.
@daveysodyssey99904 жыл бұрын
Her brothers are true guardian angels
@QuietBloom4 жыл бұрын
These are some extraordinary sisters and brothers.
@gillianhamilton65353 жыл бұрын
Hope for these lovely children, all my prayers for them. Bless families living with Rett.
@taleandclawrock2606 Жыл бұрын
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.
@sandracmyers7 жыл бұрын
Oh you beautiful people...I'm praying for you all....
@victoriapowell100 Жыл бұрын
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.
@troydaigle12609 ай бұрын
Thank you for making this documentary so that others can understand this problem. God Bless all people with this.
@kieshaannpetersen98547 ай бұрын
Thank you so much for this video ❤
@bayoulafourche Жыл бұрын
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-j8r10 ай бұрын
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...
@melissahodges66828 жыл бұрын
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
@WendyBeasley-l7v4 ай бұрын
I'm a parent of a 10 year old male with RETTS and I feel your pain.. thank you for sharing.. .
@sandycoponen45615 жыл бұрын
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 .
@vstr42764 жыл бұрын
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.
@lollipopknox4 жыл бұрын
Most of these kids have not hit puberty...
@unknownentity79643 жыл бұрын
@@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
@1houndgal2 жыл бұрын
@@unknownentity7964 Actually Boys are XY and Girls are XX.
@unknownentity79642 жыл бұрын
@@1houndgal thanks for the correction, I don't know how I got mixed up when explaining it! I corrected it now
@Dmhlcmb2 жыл бұрын
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.
@judithwerner53012 жыл бұрын
Such a wonderful little girl. I'm so happy that she is surrounded by love.
@Opalbird17 жыл бұрын
There’s a girl with Rettsearch syndrome in my city that uses a computer to communicate. It’s wonderful for her
@omniahesham84362 жыл бұрын
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
@MegaKaylicious5 жыл бұрын
I love how the fathers are so hands on as well
@illbeyourstumbleine5 жыл бұрын
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.
@polambrossi2 жыл бұрын
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.
@virginiaconnor83502 жыл бұрын
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.
@dreasmom27895 жыл бұрын
I feel for all families with Rett. Feel even more for the families with Rett and not money like this family.
@QuietBloom4 жыл бұрын
dreas mom People don’t hurt less because they have money. Their children don’t suffer less.
@jetvaughn36834 жыл бұрын
dreas mom ...wow...that was rude......a child is a child no matter if they have money or not.
@donnyreiss11804 жыл бұрын
well the thing is if u have money u can get better medical treatment.
@PureXLR8tion7 жыл бұрын
I hope scientists continue receiving funds to find the MECP2 link to reverse this syndrome.
@cutechiangels6 ай бұрын
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.
@alexascartier617 Жыл бұрын
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
@irenefeltham89844 жыл бұрын
These Parents are all Beautiful Inspiring HumanBeings - I am in awe of Their example and courage Blessings💗✨🌹🙏🏻👼
@isabellenicaud37253 жыл бұрын
Those lovung parents are warriors
@rebekahfamily22157 жыл бұрын
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
@elmienliebenberg91454 жыл бұрын
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 💔💔
@GOGOSLIFE5 жыл бұрын
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
@jeanniehargis40344 жыл бұрын
Such beautiful children and such amazing families!
@graceyoung37715 жыл бұрын
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.
@staybent93806 жыл бұрын
Chelsea's brothers are amazingly loving.
@tonylinda7440Ай бұрын
I remember following Sophia's story. Such a beautiful child ...
@regangrant13374 жыл бұрын
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💖💕
@sylviakoziarski49126 жыл бұрын
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.
@yasmineprasad1476 жыл бұрын
sylvia koziarski ... My thoughts too, music very distracting
@kw58395 жыл бұрын
Yes, why do they ALWAYS do that?!
@peggystoutemorin45295 жыл бұрын
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.
@angiefeingold81745 жыл бұрын
Some of them I cant hear the voices over the music!!!
@jimmyt56904 жыл бұрын
I think the music suited the theme
@היילימור-ר1ז5 жыл бұрын
What supportive brothers amazing they r
@harrietmatthee98654 жыл бұрын
Greetings from Cape Town..sending much Love and Light to all the beautiful Souls.in the Movie..be Blessed Special Souls..Thank you
@Jays.Rett.Journey Жыл бұрын
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
@julzee11110 күн бұрын
My heart is just breaking. God is not supposed to give u more than u can bear. HOW can you bear this?! What it's telling me is how weak I am and how lucky I am that God has allowed me to be this week. All of you have my greatest admiration and my sincerest and heartfelt prayers. Please know there is someone out there feeling your pain, but hope shop prevail.
@abuaadam60389 жыл бұрын
Thank you very much for sharing this video
@groovyangel65507 жыл бұрын
22,867 views now...thank you for posting this inspiring video. Peace & Love
@elisabethbucher7399 Жыл бұрын
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 ❤
@brendaseager73712 жыл бұрын
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.!
@nannettepeel67886 жыл бұрын
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.
@flutterby19796 жыл бұрын
My son has the MEC-P2 Deletion! They are finding more and more boys with it!
@illbeyourstumbleine5 жыл бұрын
My daughter's best friends little brother has Rett syndrome as well. We live in Southern IN.
@sophroniel Жыл бұрын
my heart goes out to these families and girls, and I hope they are ok today.
@bentleystoybox61453 жыл бұрын
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.
@היילימור-ר1ז5 жыл бұрын
It’s a very cruel disease, the children seem so frustrated, locked up in their bodies
@kathyhurst36124 жыл бұрын
היילי מור I
@sandornefodor3194 Жыл бұрын
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
@margaretmumford1474 жыл бұрын
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
@carolyndavison60952 жыл бұрын
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.
@bumblebee03694 жыл бұрын
@ 7:19 how cute lil' miss Hanna goes.... oh-ohh -oh no & laughs. That was the cutest laugh....
@debvoltolina6143 Жыл бұрын
Your two boys are amazing ,
@Dexy834 жыл бұрын
I'd love a 4+ year update on the current state of affairs in Rett research.
@christinestill50026 жыл бұрын
Music becomes annoying after awhile.
@JasonX006 жыл бұрын
Yes. I found it hard to focus. To much audio input.
@yasmineprasad1476 жыл бұрын
Christine Still ... My thoughts too 👍
@DarkStarHearts5 жыл бұрын
I just noticed the music when I read the comments, lol. Interesting how minds work 🤷♀️😊
@cloudie83145 жыл бұрын
I hadn't noticed it till you mentioned it 😣
@nincure4 жыл бұрын
@@DarkStarHearts I noticed it but didn't REALLY notice it until the comments. Lol
@wendybanuelos23103 жыл бұрын
Love you’re story ❤️ The doctor just told me my little girl has Rett síndrome ☹️
@jeanniehargis40344 жыл бұрын
Why do you play the awful noise in the background? Very distracting,
@tammybriscoe92403 ай бұрын
I find the music comforting
@Naturelover22 жыл бұрын
The monotonous music in the background spoils this interesting documentary.
@Jays.Rett.Journey3 ай бұрын
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 😢
@virginiasoskin90824 жыл бұрын
I agree. I almost turned it off because the music was too loud and repetitive. Otherwise, a very informative video.
@Jim1971a3 ай бұрын
After all of these specialists, a resident nailed the diagnosis.
@justmeashley79235 жыл бұрын
Such a lovely doc. These girls are precious. The teeth grinding would be so hard for me. I can’t deal with that sound. It literally makes my stomach turn. These are some strong mamas and dads!
@TheWendable4 жыл бұрын
Teeth grinding is the least of their worries, I doubt anyone cares how it affects you right now.
@justmeashley79233 жыл бұрын
@@TheWendable no shit Sherlock. I’m just saying that sound is awful. I’d want to help them stop. It’s HURTING them.
@carolglowacki5765 жыл бұрын
I am donating now. This is exciting to know it could be reversed. I will continue to pray and this could be the answer.
@mokeyo83825 жыл бұрын
I am so proud of those boys!
@YackBackatcha4 жыл бұрын
Don’t lose the other daughter too! Pay attention to her normal development.
@Hank7604 жыл бұрын
I noticed that also
@feralbluee Жыл бұрын
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. 🌷🌱
@christinec.79432 жыл бұрын
I really enjoyed this movie; The Beautiful Courageous Families are incredibly inspiring. I do wish the filmmaker had eased up on the non stop music; so many times I just wanted to hear the dialogue and had to compete with dramatic music that never stopped. But I pray for these Young Ladies and may their Cure be the Next Miracle another movie can be made about!
@RebornAgain20244 жыл бұрын
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
@TheLibby20027 жыл бұрын
So interesting and very sad.
@hotfootDDD3 жыл бұрын
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!!
@IndigoRoses74 жыл бұрын
Precious children i wish I could hug ❤ bless these families
@patriciakelly695 жыл бұрын
Beautiful children. I hope there is a break through for all these kids. My heart goes out to these families. It must be so difficult when you have other children to get the balance right so they don’t feel left out. X
@B.M.Gambaz6 жыл бұрын
Amazing families❤
@elisabethbucher7399 Жыл бұрын
Just one thought came to mind: the parents in this film all seem to be well off with jobs, support systems and competent medical help. What of those who don't have those?
@veritysimone Жыл бұрын
Exactly!!!!
@bellalukas77075 жыл бұрын
These poor beautiful children 😭 It’s absolutely horrible that they have to suffer like this. It’s not fair. I can’t even start imagining what families go through as well not being able to help them. World it’s so not fair