The saddest disabilities in my opinion are ones like these: where the person is completely mentally aware but the body just doesn't function. It sounds like a nightmare, being locked into a body you can't control and not being able to communicate that to anyone :(
I agree with you, the eldest girl looks so sad at times because she can’t communicate what she’s feeling. I’m so glad she has a wonderful mum and carer though, they really love and care for her
Yeah and another thing I don't like about it is that people with disabilities tend to get babied. Like I don't know everyone's specific family situation, but I feel like sometimes even their parents and caregivers talk to them like they're toddlers, only ask them simple questions, etc. and don't trust that they could be a lot more mature and intelligent than they seem. I know it's difficult because these girls can't communicate very easily, but just in general. (But I can see that these moms understand their children's cognition better.) ~:~
That’s locked in syndrome, not Rett’s. Rett’s is a reversal from normal development at 2/3 more or less, then a regression. In locked in, the intellect is often intact. In Rett’s, the intellect decompensates.
The older girl’s eyes looked so intelligent. It seemed like a seriously smart girl trapped inside a body that isn’t working right. It must be so so frustrating.
I can't imagine how awful it must be, I have eds that's not a patch on this and that's frustrating when I want to do something I can't. This poor women struggles so much to even communicate. Someone in a Facebook eds group said she couldn't think of anything worse than eds and it's! I could have wrote her a list of far, far worse things. When she was sat calmly and they wondered if she was going to have a seizure she just looked like an average young woman, just sat there thinking aimlessly or watching the world go by
K Nogne that’s exactly what I was going to comment. And her episodes seem as those of someone who is frustrated because they can’t do what they KNOW what they’re capable of. It’s so sad.
At one time I was sick in a way that I couldn't communicate but in my mind I could hear myself and what I wanted to say but just couldn't get my voice and mouth to do as I wanted. It's so sad that i know inside she is completely wise and smart and wants to say so many things
I agree -- you can see that 'there's someone home' for sure. Though her mom is doing an amazing job, there are several times in this doc that her mom speaks to Sarah like a small child. Like you said, it must be so frustrating! I also wonder about the competency of Sarah's carer. It worries me that she thinks benzos are painkillers. She even lists morphene as a benzo (it's an opiate, and a common one at that). I wonder what kind of training she's had.
Retts doesn’t mean intellectual disability, I have a retts client and she is super intelligent and I feel for her, the Toby is so brilliant and such an essential part of my clients happiness so she can communicate with us.
If you look at Sara's eyes, it is like she knows and she's stuck. She can't tell anyone but she's trying and she's frustrated. You can see fear, anger and frustration. It is so so sad I can't imagine being in her position unable to control what's going on . This makes me sad and I hope they one day find a way to stop the degeneration these children go through before they get to the point where there's no return to where they one were.
The part about 23 minutes in, when she's talking about not writing people off just because they are nonverbal, is so so important! I work with kids on the spectrum, a handful of whom are nonverbal and let me tell you once you know them, you could never mistake them for being uncomprehending or lacking personality or presence. (I've had actual arguments with a 4 year old who is nonverbal and autistic, and who does not use any adaptive communication system/devices)
I was born with a disability and I love watching these stories to better understand how others are and watch their challenges and incredible triumphs as well.💕
My little sister had Rett syndrome and passed away in 1993, when she was almost 6 years old. At that time, much less was known about it, but this much was evident: she was the sweetest, most loving, incredible child I have ever had the fortune to know. I miss her so much and I'm glad that more is known about Rett syndrome now.
It broke my heart when Sarah tried to bite her gloved hands so violently when she was frustrated. As a mother that would wear out my soul. I like that her mum gave her a stylish haircut with the red dyed curls.
If they have an mcn (multi channel network) basically like a manager they got to keep their comments. Sbsk didn’t wanna sell out which i comment then for. #BringBackSBSKComments
Sarah’s mom and caregiver really seem to be doing the best they can to keep her stimulated and respect her as a person. I’ve very rarely seen an adult invalid who’s caretakers take the time to dress her to her age. If she’s aware of how she looks at all their effort has to help her morale.
@@laurafrakinroslin and new research indicates rett girls can be of completely normal intelligence, it’s so important to let these girls feel respected.
One of the very first girls I ever took care of as a nanny/PCA had Rett syndrome. By the time I met her she was alot like Sarah. She understood so much. So it was one of the best days I ever had in that field the day she first smiled at me and squeezed my fingers. Her forms of affection and understanding.
I wonder if Sarah's mom could ask the local church if they know of a small group of girls to hang out with at home. Just someone near her willing to watch a movie, a novel or something like that. You could still have the respite worker and the mom with her to make sure everything is good but someone close to her age willing to sit and watch a movie or talk to her about a book they are reading would probably be good everyone. Idk just a small though.
How incredibly frustrating it must be to not be able to communicate the smallest of things and not be able to do such a small task we take for granted like drinking or walking. My heart as a mom would be so broken every day.
My cousin had Rhett syndrome. She actually was a normal developing child. She talked and walked when she was suppose to. She talked normally and was even potty trained. At about 4 she stared wetting the bed. Over the course of months eventually she started messing all the time. Her speech was affected. Eventually she stopped speaking but could walk fine. She was fun to be around. She loved Disney movies or anything with songs in it. She still picked her clothes. You could hold up outfits and she would grab what she wanted. All around she was pretty amazing. Eventually she couldn’t walk on her own anymore. She passed away when she was 21.
I remember reading about a girl with Rett who sounds a bit like that on a US Rett syndrome website. Her name is/was Katie Hallstrom. Stopped talking about age 4 or 5 but never stopped walking. Is this the same person?
I apologize for butting in, but is it possible that she had Childhood Disintegrative Disorder(also called Heller's Syndrome)? Both Rett and CDD appear to be very similar, but I couldn't help but recall that loss of bladder control is one defining characteristic with CDD, as is the usual later (4yrs old as you noted) regression. May Carrie rest in peace.
Honor Ember no she was tested. Plus my uncle and unity both had genetic testing done and found they both carried the gene for it. They told them if they had another girl they would have had a 50/50 shot of another one being born the same way.
Amanda B obviously you have never been around people with disabilities. She wasn’t being kept alive with machines. My cousin had her own loving personality. She lived of her own will. It was actually her bowel that burst and she wasn’t strong enough to survive surgery so they made the choice to let her go. Until you live with or around people with disabilities you have no idea what you are talking about. Wow ignorant.
I worked with a young girl with retts. She honestly helped set the ball rolling for me to work with children with special needs. From my experience their thoughts work... Their body doesn't... It's sad but they're beautiful children. Once you get that communication you learn how their brain works.
4 years ago. I've worked with a couple more girls since. The light in their eyes when you finally reach them. It is sad seeing them trapped in their bodies... But when you do reach them they can flourish still. One girl who did a presentation for the class I was in has retts. She was incredibly independent in all ways she could be. She managed to graduate highschool in a normal program and get accepted into university into a statistics program. She needed a lot of supports, but once she had them she was fantastic. She used a mixture of cards and eye gaze typing to communicate. Her biggest wish was that people don't treat her like an invalid just because her body doesn't work and instead be patient and listen to her mind.
I know a girl with Rett's, and she is so much like Kendyll. I really feel for these parents whose children are trapped in bodies that just won't do what they want. The short life expectancy is an added heartbreaker. We see you, parents. You're troopers. You got this.
These mums are so heart-wrenchingly beautiful and caring towards their daughters. All the love and patience they have for their children is just phenomenally beautiful. As devastating as their girl's conditions are, they needed to be with these mothers. My heart truly goes out to them. What an inspiration to live as much and as lovingly as we can.
9:49 this is so painful to watch , it almost seems like she is trapped in her body, like she's aware of everything and intelligent but her body is malfunctioning
Obama Binladon Please don’t judge people if you don’t know them. It’s very hard not being able to do the things everyone is doing. It’s physically and emotionally draining for them.
Obama Binladon How is she supposed to get a job. Yes, she may have full mental function but there is basically not job that she could do. The fact that they hire someone to help take care and look over to just do basic functions, in fact proves me right. I’m not 100% justifying the way she acted, but think of how infuriating it would be to have to figure out how to communicate you basic needs without being able to talk or move your body in ways you want it to while everyone else around you can do these simple thing, almost without thinking.
Maya Miller thats a troll you're arguing with, his goal is just to make people mad and he knows it's BS, so dont give him any attention or any more of your time 😊
A teacher of mine had a niece with Rett’s. I always wanted to learn more about it because of how often she talked about the girl and how smart she seemed but how she couldn’t communicate that. This video gave me some really useful insight about Rett’s. It’s obvious that there isn’t much if any cognitive effect of the disorder even if it seems like that. Sarah seems like a fully cognizant adult who just struggles to make that known. These girl’s caretaker’s can see something in them that no one else can and their dedication to giving them the best life they can is truly admirable.
Poor Sarah looks so sad at that gathering. She may have Rett but she's 24, she has the mind of a 24 year old from what i've gathered. Take the poor woman somewhere else, she's an adult! Even if she's trapped inside her body
@@user-jq8qv4yx4h semicolon tattoos started as a subtle note to suicide prevention. That is, "she could have chosen to end her sentence [life], but didn't" is how they describe it, as that's how you use the punctuation. It's to symbolize making that choice to keep moving, keep living, there's more 'story' for you just waiting... It's a symbol of hope. You can look up Project Semicolon to learn more. It was started by a young woman who lost her father to suicide. Hope that helps.
Lisa Moon Ok, thanks. I did look further in the comments and found a reference to suicide, so sort of figured it had something to do with that. Do you get the tat if you had tried suicide and failed?
A mother's love for her child just increases when your child needs you most I admire you for your strength your courage but most of all for your tender loving care. The way that you can communicate with your daughter is unbelievable, until you can see it for yourself. You are both incredible mothers Sending you both good wishes and love from the UK 🇬🇧❤
Sarah is in there! The Mom is so right about everything she says! I wonder if Sarah would enjoy a set of head phones with classical music or some other genre??? I watched another family coping with their disabled child and that was their idea with the head phones
OMG.. the poor 24 year old Sarah. I couldnt believe that they put her in a class for mentally handicapped children when she apparently has normal comprehension. This would be like throwing you or me into a class full of kindergarden children doing their activities and expect us to have fun there doing that. No wonder she looked real real sad. A complete put down to her intellect.
It must be hard to figure out what exactly her intellectual level is when she can't control her body well enough to respond to what people say. I'm so glad she has the eye gaze tracking computer to help.
Have you ever read the book "Out of my Mind" by Sharon Draper? It's actually about that exact thing, only replace Rett Syndrome with Cerebral Palsy. It's about a very intelligent girl who's treated as mentally handicapped due to being unable to communicate normally, until she gets a speech device
Yeah they look like absence seizures to me. I have epilepsy but only ever have grand mal seizures - but the people I've met who have this type do this exact same thing, their muscles freeze up and they just stare.
> "Could Sarah be having absent seizures when she stares vacantly into nothing?" My brain injury also gives me "grey-outs". Very rarely do these grey-outs happen to be black-outs (unconsciousness).
@@PixelTheExtraTerrestrial My son had them and the strength that was in his hands was incredible, one time when he was having a petti mal he actually went into the bathroom and turn the cold tap so hard he broke it, he had no idea that he was doing this, i thank god it was the cold not the hot tap. When he was having them i would just lead him gently to his room lay him down until it passed
Bless those poor girls. To an extent I know what it's like to be trapped in a body that isn't functioning correctly. I have seizures. Usually I black out during the seizure and don't remember a thing, but on occasion I will get one and stay awake through the whole thing. It is absolutely terrifying to have your body flail and flop and you have no control over it. These poor girls experience that on a regular basis. I'm glad they have parents that really love and care for them. Edit: I saw that the older girl used medicinal cannabis. I wish it was legal in my state already. Weed helps my seizures more than the meds I am prescribed. It works wonders.
Jennifer Dixon yes! I also have seizures and I also get trapped in my body. My eyes will be open but I can’t move at all but make noise. It’s terrifying but I know it’ll go away, I can’t imagine what it’s like for it to never stop. It’s must be so hard for the parents and girls. I second the weed use also! If I didn’t have weed my last few years would be miserable. Thank god is legal in my state. I hope it becomes legal for all Americans! Best of luck (:
Jennifer Dixon CBD oil is legal. I get mine from a wonderful company in Kentucky. They ship anywhere. It has only trace THC, won’t get you high. If you’d like more info, tell and I’ll post some links. ❤️
Jennifer Dixon bluegrasshempoil.com is a family farm, processing plant, and laboratory on site. The THC is within the farm act limit. I don’t want to say more here, but you may email me LibbyHussein@aol.com and we can certainly discuss further.
My 18 year old son has cerebral palsy, which is obviously different from Rett Syndrome but I can relate so much to the moms when they said that they read about the syndrome and just knew, and that they were just happy to have a diagnose. We've been there too.
Sarah is an angel, beautiful, intuitive, even across the screen her eyes are so expressive, she is phenomenal and these women who take such loving care are angels too! This video has really left me with strong emotion of love, thank you for sharing a part of her life for us to better understand and be more empathic.
They must have maintained all intelligence. They seem to know they’re trapped. They’re frustrated, clearly, because they can’t express anything. And you can see it in their eyes. That knowing and context is there. My god, it must be like a living nightmare.
Jane Hakanson that my friend, Nick Chisholm. He’s a weight lifter. He can communicate and recently got married. He’s a very cool guy. He incurred a sports injury that caused damage to the area of the brain responsible for speech. He lost his ability to speak, but not to communicate. I love that guy!
@Jane Hakanson Https://th-cam.com/video/nQYfvLTId0Q/w-d-xo.html > "Locked-In Syndrome: Nick Chisholm " > In 2000 Nick Chisholm had a stroke after a game of rugby. > It left him with locked-in syndrome which means his body is paralyzed but his mind is aware and alert. Unlike most stroke victims, Nick was not self-inflicted by poor diet, poor exercise. It is similar to my Traumatic Brain Injury. These videos are both from New Zealand.
Rett can affect intellect. Some people with rett have a severe intellectual disability and others have normal intelligence, and of course there are the in betweens.
I work as a caregiver for a 45 year old with Rett syndrome. She too bites her thumb and wrings her hands. She is non verbal but very intelligent and i can ask her to do something and 40% of the time she can do it. She also walks and swallows her pills on her own. She can hold a glass to drink but i have to feed her and forks and knives or even gripping food is too difficult for her. She also sleeps 12 hours a night with the help of trazadone. It really is interest the similarities yet vast differences individuals with retts can have
I suppose it is pretty tough being a caregiver. it does pose a lot of challenges. But I'm sure once you come out of all it, you'll learn to become stronger, and stronger for it too. I'm sure you'll learn to love what you do, in time. Faith and patience is the key to all situations. You as a caregiver, God bless your kind soul
Wow, your patient can do a lot! I work as a night nurse for a teenager with Retts. She cannot walk and has no voluntary movements. She pretty much just grabs at her hair if she’s bored or agitated. ( which is most of the time) And she wakes up several times most nights and whines until you take off her leg braces and Bipap. I don’t know why her mom doesn’t want her daughter to take any sleep medication. Trazadone sounds like it works really well for your patient. I pretty much have to swaddle my patient to keep her arms from flying all over place and her banging them against her headboard. Or I weigh her arms down with pillows to keep her from rubbing her eye or pulling her hair out. Her mom says there is going to be a cure for Retts in 3 years. I really hope so!
Katrina Olsen Suggest for her mother to have a weighted blanket when she sleeps. These used to be crazy expensive, but the last year or so, they started to be available from more shops online, and the price has dropped considerably.
@@katrinaolsen2444 Please minimize messing with her arms as much as possible. Pulled hair is an aesthetic concern whereas the hand movement is a sensory stim they NEED to do to process the world as with other autistic-type motions. I am someone who has these kinds of motions and people are far too hasty to underestimate the neurologial harm it does to interfere.
Hey mom,.. When your aide is there..aren't you supposed to take a bit of a break for yourself? What you do every day is very bearing on a person..Bless you... Your daughter knows how much you love her...
My cousin has a set of fraternal twins, Michael and Mikayla. Mikayla was squashed in the womb, and suffered oxygen deprivation. She's had Rett's since birth, her brother is perfectly normal. She's such a beautiful little girl. They're going to he 7 soon. Mikayla also chews her hand and has now started having fits, poor sausage. It's very hard on my cousin and his wife. We had a fund raiser about two years ago, to get her a special machine that tracks her eye movement, I stand corrected, but I think it's for communication, which they managed to get for her. Mikayla Meneses ❤🙏❤
Rett Syndrome is not caused by oxygen deprivation of the brain. And Rett doesn’t happen at birth. Rett children appear normal at birth. And a lot learn to walk and talk. But then they regress. If they have Atypical Rett, they may continue to walk and talk some. It sounds like your cousin’s daughter had a birth injury that has caused her Brain Damage.
@@konjurekatrina I never said or implied that Mikayla's Rett's was caused by the oxygen deprivation, it is a statement on it's own, hence the full stop after the statement. Children with Rett Syndrome *_do_* technically have it from birth, the mutated gene is already "there" in the body *_from_* birth...I dare say developing during gestation (since tests for the gene can be done prenatally). It's not like it gets contracted from someone else, like a cold or flu virus or something, they don't suddenly "catch" Rett's - the way you make it sound. Since a baby doesn't really attempt to do/can't do and isn't aware of much, within the first few months of life, Rett's is overlooked. They look, and appear to be, like other babies. So technically, they are *born* with "unseen" (if you will) mutated gene...and the symptoms manifest slowly during infancy, from about 6 months old. She didn't walk, talk or sit up on her own, but did communicate in her own way and so, wasn't "brain damaged", she was alert and aware. Anyway, very sadly Mikayla passed away last year in April, aged 7...R.I.P. beautiful girl 💜💜💜
@@veesea8889 I’m so sorry that Mikayla passed away. That must have been devastating for everyone involved. I know that Rett is from a mutated gene and isn’t something a child “catches”. What I meant was children don’t usually show symptoms of Rett until 6 months to 2 years old. I have watched A LOT of parents describing their children and how their child was diagnosed. ALL of the parents described that their child SEEMED normal at birth. And that their children had started to talk or at least say words. And many of them started walking as well. They ALL said their children noticeably regressed. From what you described, her family were aware from birth that all was not right with her. That is not how any of the parents I’ve seen discussing their children described their child. They all thought their child was developing normally until they noticed their child started regressing. And just because someone has had a brain injury, it does NOT mean they aren’t alert and can’t do anything. My cousin’s husband was in a motorcycle accident when he was 17. He spent a month in a coma. And he has a permanent brain injury AKA brain damage. He can walk, talk, cook and do a lot of things! He fathered 4 children and helped raised them with my cousin like any other couple raising children. However, he lost his sense of smell because of the accident. So he didn’t stay alone with the children when they were infants because if there was a fire, he wouldn’t be able to smell it and take immediate action. He can drive locally, but highway driving makes him dizzy. He needs help staying on track when they are doing something that has a time table because he gets easily distracted. Two of my cousin’s children have graduated from high school and are at 4 year Colleges/Universities. He is a wonderful father who raised wonderful children. Again, I know what causes Rett. I was a Nurse for a teenager with Rett. I did a lot of reading about Rett. I also watched families talk about their children who have Rett, right here on TH-cam.
I have two children. A girl 20yrs old ,and a boy 18yrs old. My son has autism. It’s been incredibly hard for my daughter.Their father died when they were babies. It’s affected her in such a bad way. I’ve had to spend so much time with my son. She moved out with her boyfriend and his family when she finished high School. I miss her It’s better for her though. We keep in contact, not much though. She’s very bitter about how hard her life was with him. That 4 yr old Kendal’s little brother reminds me of my daughter sitting in the background watching while my son took most of my time.😔
So deeply, darkly & profoundly heartbreaking...I long to reach out to Sarah's precious, loving Mother & hug her....To show support for her, Sarah & other Rett families...
I love that you allowed us to see Sarah, I can relate to a certain extent. My son has Spinal Muscular Atrophy, but the difference is for me and him as that he is totally verbal. So I can only imagine what it would be like to have to learn a totally new language w your daughter. BC I have seen so many other kids w disabilities, it makes me feel so lucky that Sawyer has as much as he has but it also makes me more aware and feel for parents that have soon much more to figure out... honestly though it makes me a better person bc I can see all of the issues that other patents have to figure out.... they are in thére and their brains are just as alive.... I wish and hope for all the strength to you and your guys to be able to learn how to understand what they are trying to tell you/us..... I just wish all of you all of the best. No matter what, they are people and they know what they want, they are not lesser than any of us, and actually are usually better humans than most of our population.
The families are so strong. One of the (many) reasons I don't want kids is that I just couldn't care of a special needs child, already a "normal" child would be too much for me.
Not to underestimate the sorrow of this situation but don't put your feelings onto this young lady. Her face is not expressive but her eyes shine through with soul. She seems to be enjoying parts of her life and not others. Isn't that the same as all of us? Thankfully she has a loving mother and a skilled carer who are so sensitive to her wishes. And she clearly indicates what she wants- amazing spirit.
27:46 broke my heart, she had absolutely no interest in what was going on and would much rather do something else than look at butterflies and roam around under a rainbow sheet. I really hope she’s doing fine and has a fun and fruitful life, regardless of the circumstances.
I'd feel humiliated and angry if I were treated like I was 6 at 24 years old too. Sarah seems to not only be fed up with the pain of her condition but moreso of how people around her patronize her all the time as if she had no intellect. Help her live an actual adult life because from what I gather she's begging for it.
Sarah doesn’t have the maturity of a normal 24 year old. And she’s not being “patronized”. Her mom said she has no regular sleep schedule and she apparently doesn’t get a whole lot of sleep. No living creature can function without a regular sleep schedule. Her mom also said she has chronic pain. Which is distracting to Sarah too. Sarah very likely has normal intelligence. But intelligence and emotional maturity are not the same thing. She isn’t going to have the same maturity that a person who isn’t profoundly disabled has, because she cannot do anything for herself. Girls and women with Rett don’t have any control of their muscle movements. Particularly their hand movements. Generally the only things girls and women with Rett can do is pull their own hair, scratch at their own faces, and bite themselves. Most Rett patients have arm braces put on so they won’t hurt themselves.I was a Nurse for an 18 year old girl with Rett Syndrome. She received a lot of physical therapy and she was fairly healthy. However she didn’t ever seem like she had any interest in anything other than a couple of different tv shows that were created for preschool age children. I tried to get her interested in shows that were for older children and teens. And she’d scream until I put on one of the tv shows that were created for toddlers, that she liked. I’ve seen videos of other girls with Rett who are really responsive to their families. And it’s very obvious that the girls love interacting with their loved ones. That wasn’t the case with the girl I took care of. She sometimes would laugh at the show she was watching. But that was the only time I could tell she was enjoying something.
And for Sarah she knew she used to be able to do so many things. She was learning to talk, could walk and run, and now can’t do most of those. She’s had to watch herself lose so much and not be able to stop. At least Kendall had it from a much younger age, not that it made it that much better, but the year and 1/2 between when they both had they’re first symptoms would definitely make a difference for them later on in life.
Gosh. It was heartbreaking to see Sarah get so frustrated that she was screaming. It’s so sad to watch. I wish her the best, she is a smart and beautiful girl.
Sarah should consider going to Camp Barnabas in the States, if she's able to. It's a camp for disabled people, and I feel like she would really enjoy it.
My son has severe autism, he said mom, dad, dog and lost all language and is completely nonverbal, he is 3. These moms and stories help so much to know I'm not alone even though their stories aren't just like mine to know such loving families who have difficulties are doing their best and happy overall makes me happy for what the future holds for my family and my son.
WhiteGirls WearWigs2 that must be terribly hard at times for you. I have a lot of admiration for moms who have children with disabilities and their strength. My heart goes out to you. Just know you are not alone. There are other moms out there dealing with the same. Please do not forget to take care of yourself too.
sandi kieffer thank you so much for taking the time to say that it's so nice to hear someone sympathize. Most days are extremely hard and i had no idea what kind of patience and love I had til I had my special needs child. Its like I live in a foreign world all the time it's hard to see other families enjoying their lives clueless to how blessed they are. My son is such a loving child though through all his struggles. I am blessed because he is so innocent and doesn't have a care in the world. He doesn't know any of the worlds worries which is great to me.
Your son is not the only one who is special in his family. You are just as special. He is a celestial spirit who doesn't need to be tested here because of how valiant he was before he came to earth. If you could see the angels that are around him (and Sarah) wouldn't that be great! Kudos to you! (I hope this didn't come across too religiousy, I just wanted to give you a great, big pat on the back.)
I can't finish watching this. My heart can't take it. I hope the best for them, they don't deserve to live like that. I'm glad they have immense love from their parents and caretakers.
sarahs mom seems to speak to her like a child, i understand thats hard not to do but its sad - she’s completely there cognitively and it must be so frustrating to be talked to like she isnt 24
I feel so sad yet so grateful for her. She must have felt so lonely and trapped and unheard, for so long until she got the eyegaze device. I hope more and more girls can get this same device and finally get to say and do what they need. Thank you Sarah
The U.S. doesn't offer hardly any help, there's no respite care here. And honestly your schools seem to really engage all students and give as much 1 on 1 help as possible. I'm impressed with what you do get help with but i can only imagine how much more they need. These mothers are showing thetrue meaning of unconditional 💘 love. Good bless them all and the kids.
Sarah’s such a beautiful young woman & you can see how intelligent she really is. Retts is such a cruel disease, the fact that the child progresses normally in the 1st couple of years is why it takes so long before the correct diagnosis is given. You can see Sarah’s mum blames herself even though she knows it’s not her fault that she didn’t do anything wrong, the way she gets upset still shows she thinks she caused the problem. My heart really does go out to her, it’s got to be so hard for them. It’s very like the “locked in syndrome” in many ways.
I was surprised when Sarah's mum said having eventually a diagnose of Rett syndrome was terrifing but a good thing, because at least it wasn't her. Surprising because if she was the problem, Sarah would have been traumatized but not so extremely affected. It would have been better for Sarah if the problem was her mother and not the Rett sindrome!
how cool that she got a Tobii Dynavox eyegaze! my five year old daughter has a severe case of retts and has been using and eyegaze device at therapy and through her school program but w ecannot afford a device. We have been fundraising but have decided a wheelchair mobile vehicle was priority. Hopefully we'll get one eventually. www.gofundme.com/edenswheelchairvan
Kayla Suitor, where do you live? My bf (daughter with Rett) was able to get insurance to pay for her Tobii dynavox. He worked with the school system, her MD, and the Rett program in which she was involved at Boston Children’s Hosp. If you’d like more info; if I can help at all, please email. LibbyHussein@aol.com I have names and info on some Rett resources that may be of assistance ❤️
I know its not what happened but at 24:50 it sounded like you broke her little leg. These sweet girls are so incredibly lucky to have such amazing Mamas and support people!
I used go work caring for a woman with Rett. Although she had a lot of help, seeing someone trapped in their own body like that is horrible. I hope they find a cure soon 🙏🏻
My Granddaughter was just diagnosed with Rhett Syndrome and Ogden Syndrome she's three and we have no idea what to expect no one in our family that we know of has anything like it my sister is on the Autism spectrum but that's it
@@galaxysnot6276 I just mean....how do you know he wants a mowhawk? And how do they know she wants dyed hair? I'm not trying to be rude I'm just intrigued! Idk your brother but maybe he can gesture in some way that that hairstyle is what he wants, but I'm not so sure about her idk idk
@@likklesmellyduck if you watch the video you'll note that it's repeatedly said that Sarah is intelligent. It's likely she wanted the dye. Just because she can't verbally ask for something doesn't mean she can't ask for things. I mean hell in the video she asks to be taken out of her chair and back to her room.
Sarah is a beautiful, incredible girl, and I really hope that we can see developments and improvements soon that bring more depth and happiness to her life.
Well, it does say in the Bible that God is the one who creates all the evil, so... pretty sure he's not gonna fix this, if he's the one who did it. That little book also says it's wrong to kill, so the only option the parents have at this point is to help their children the best they can in their short years on this planet.
My aunt has rett syndrome. She is almost 40 years old. It's a rocky road, she has been hospitalized twice in the last 6 months because she got sick, then once with congestive heart disease. She can't walk much anymore, she gets tired easily, and a lot more.
Beautiful mamas oh so definitely chosen by them. I loved seeing this and the love and attention their mothers provide. Great job for all of you. Tears, I felt the love so thank you for sharing. 💕💕
What a dreadful illness. That lovely girl knows what she wants but so difficult to make herself understood. Trapped in there bodies. I pray they find a cure soon. Such lovely children and families. Xxxxx
Oh sarah my heart. I’m sure that when your soul passes into the next life you will be able bodied and able to exceed everything that your mind imagines doing.
I have something to say, we should be extremely thankful that most of us are diagnosed with any of these diseases that are so severe. And be thankful that we have fresh water everyday its important and its not magic. Ok thx thats all I wanted to say XD this video gave me hope.
Do you have any palliative care doctors in your area? I have ms, and moderate to severe pain has been one of my worse symptoms. I started going to a palliative care doctor for pain management. I have been taking methadone for about 9 months now. It has been very helpful.
The saddest disabilities in my opinion are ones like these: where the person is completely mentally aware but the body just doesn't function. It sounds like a nightmare, being locked into a body you can't control and not being able to communicate that to anyone :(
I agree with you, the eldest girl looks so sad at times because she can’t communicate what she’s feeling. I’m so glad she has a wonderful mum and carer though, they really love and care for her
@@sophiee9426 but this eye computer is great
willem H we don’t care about you stupid computer
Yeah and another thing I don't like about it is that people with disabilities tend to get babied. Like I don't know everyone's specific family situation, but I feel like sometimes even their parents and caregivers talk to them like they're toddlers, only ask them simple questions, etc. and don't trust that they could be a lot more mature and intelligent than they seem. I know it's difficult because these girls can't communicate very easily, but just in general. (But I can see that these moms understand their children's cognition better.)
~:~
That’s locked in syndrome, not Rett’s. Rett’s is a reversal from normal development at 2/3 more or less, then a regression. In locked in, the intellect is often intact. In Rett’s, the intellect decompensates.
Oh these mamas. Bless them for loving on their girls like they do. So sweet.
They're idiots for wasting their lives taking care of useless pieces of meat.
@@JustSomeAussie1 what a vile thing you are. Your comment made me feel sick!!
@@louloo5286 Boo hoo
@@JustSomeAussie1 no im not crying. Evidently you're the one crying out for attention, trying to troll online.
I feel sorry for you 😘
@@louloo5286 I'm not trying to troll, what I said is what I believe.
The older girl’s eyes looked so intelligent. It seemed like a seriously smart girl trapped inside a body that isn’t working right. It must be so so frustrating.
I can't imagine how awful it must be, I have eds that's not a patch on this and that's frustrating when I want to do something I can't. This poor women struggles so much to even communicate. Someone in a Facebook eds group said she couldn't think of anything worse than eds and it's! I could have wrote her a list of far, far worse things. When she was sat calmly and they wondered if she was going to have a seizure she just looked like an average young woman, just sat there thinking aimlessly or watching the world go by
K Nogne that’s exactly what I was going to comment. And her episodes seem as those of someone who is frustrated because they can’t do what they KNOW what they’re capable of. It’s so sad.
I can’t imagine. I’m disabled in several ways. I’m diabetic,deaf,epileptic,and I have major anxiety and depression.
At one time I was sick in a way that I couldn't communicate but in my mind I could hear myself and what I wanted to say but just couldn't get my voice and mouth to do as I wanted. It's so sad that i know inside she is completely wise and smart and wants to say so many things
I agree -- you can see that 'there's someone home' for sure. Though her mom is doing an amazing job, there are several times in this doc that her mom speaks to Sarah like a small child. Like you said, it must be so frustrating!
I also wonder about the competency of Sarah's carer. It worries me that she thinks benzos are painkillers. She even lists morphene as a benzo (it's an opiate, and a common one at that). I wonder what kind of training she's had.
What a cruel disease. These families are fantastic and deserve all the help they can get.
Retts doesn’t mean intellectual disability, I have a retts client and she is super intelligent and I feel for her, the Toby is so brilliant and such an essential part of my clients happiness so she can communicate with us.
If you look at Sara's eyes, it is like she knows and she's stuck. She can't tell anyone but she's trying and she's frustrated. You can see fear, anger and frustration. It is so so sad I can't imagine being in her position unable to control what's going on . This makes me sad and I hope they one day find a way to stop the degeneration these children go through before they get to the point where there's no return to where they one were.
The part about 23 minutes in, when she's talking about not writing people off just because they are nonverbal, is so so important! I work with kids on the spectrum, a handful of whom are nonverbal and let me tell you once you know them, you could never mistake them for being uncomprehending or lacking personality or presence. (I've had actual arguments with a 4 year old who is nonverbal and autistic, and who does not use any adaptive communication system/devices)
Why are you arguing with a disabled four year-old??
@@reidchambers2521 likely, they meant that they needed the child to do something, and as four year olds do, they refused 😂
@@reidchambers2521 😂 that made me laugh. She means it well.
@@reidchambers2521 have you met a 4 year old?
I was born with a disability and I love watching these stories to better understand how others are and watch their challenges and incredible triumphs as well.💕
My little sister had Rett syndrome and passed away in 1993, when she was almost 6 years old. At that time, much less was known about it, but this much was evident: she was the sweetest, most loving, incredible child I have ever had the fortune to know. I miss her so much and I'm glad that more is known about Rett syndrome now.
It broke my heart when Sarah tried to bite her gloved hands so violently when she was frustrated. As a mother that would wear out my soul.
I like that her mum gave her a stylish haircut with the red dyed curls.
Crazy how this channel still has its comments while "Special Books by Special Kids", a channel with similar content, has been blocked!
Same as barcroft i think barcroft tv is exploitative
If they have an mcn (multi channel network) basically like a manager they got to keep their comments. Sbsk didn’t wanna sell out which i comment then for. #BringBackSBSKComments
PeachyPanda Chris should’ve visited Kendyll and Sarah.
i think it has to do with the name of the channel unfortunately as i believe most of the sbsk audience are adults.
PeachyPanda indeed it’s crazy
Sarah’s mom and caregiver really seem to be doing the best they can to keep her stimulated and respect her as a person. I’ve very rarely seen an adult invalid who’s caretakers take the time to dress her to her age. If she’s aware of how she looks at all their effort has to help her morale.
Yeah her sun glasses and dress and hair color were seriously cute! Pretty girl
Isn't invalid sorta.... old fashioned and odd ?
@@marisaelyse82 I have no idea what the current term is. Appropriate language seems to change so frequently. I meant no malice by it.
@@laurafrakinroslin and new research indicates rett girls can be of completely normal intelligence, it’s so important to let these girls feel respected.
One of the very first girls I ever took care of as a nanny/PCA had Rett syndrome. By the time I met her she was alot like Sarah. She understood so much. So it was one of the best days I ever had in that field the day she first smiled at me and squeezed my fingers. Her forms of affection and understanding.
I wonder if Sarah's mom could ask the local church if they know of a small group of girls to hang out with at home. Just someone near her willing to watch a movie, a novel or something like that. You could still have the respite worker and the mom with her to make sure everything is good but someone close to her age willing to sit and watch a movie or talk to her about a book they are reading would probably be good everyone. Idk just a small though.
That's sounds like a lovely idea!!
How incredibly frustrating it must be to not be able to communicate the smallest of things and not be able to do such a small task we take for granted like drinking or walking. My heart as a mom would be so broken every day.
My cousin had Rhett syndrome. She actually was a normal developing child. She talked and walked when she was suppose to. She talked normally and was even potty trained. At about 4 she stared wetting the bed. Over the course of months eventually she started messing all the time. Her speech was affected. Eventually she stopped speaking but could walk fine. She was fun to be around. She loved Disney movies or anything with songs in it. She still picked her clothes. You could hold up outfits and she would grab what she wanted. All around she was pretty amazing. Eventually she couldn’t walk on her own anymore. She passed away when she was 21.
I remember reading about a girl with Rett who sounds a bit like that on a US Rett syndrome website. Her name is/was Katie Hallstrom. Stopped talking about age 4 or 5 but never stopped walking. Is this the same person?
Matthew Smith no it isn’t. My cousins name was Carrie and we are from Canada. I do find others stories interesting tho
I apologize for butting in, but is it possible that she had Childhood Disintegrative Disorder(also called Heller's Syndrome)? Both Rett and CDD appear to be very similar, but I couldn't help but recall that loss of bladder control is one defining characteristic with CDD, as is the usual later (4yrs old as you noted) regression. May Carrie rest in peace.
Honor Ember no she was tested. Plus my uncle and unity both had genetic testing done and found they both carried the gene for it. They told them if they had another girl they would have had a 50/50 shot of another one being born the same way.
Amanda B obviously you have never been around people with disabilities. She wasn’t being kept alive with machines. My cousin had her own loving personality. She lived of her own will. It was actually her bowel that burst and she wasn’t strong enough to survive surgery so they made the choice to let her go. Until you live with or around people with disabilities you have no idea what you are talking about. Wow ignorant.
I worked with a young girl with retts. She honestly helped set the ball rolling for me to work with children with special needs. From my experience their thoughts work... Their body doesn't... It's sad but they're beautiful children. Once you get that communication you learn how their brain works.
4 years ago. I've worked with a couple more girls since. The light in their eyes when you finally reach them. It is sad seeing them trapped in their bodies... But when you do reach them they can flourish still. One girl who did a presentation for the class I was in has retts. She was incredibly independent in all ways she could be. She managed to graduate highschool in a normal program and get accepted into university into a statistics program. She needed a lot of supports, but once she had them she was fantastic. She used a mixture of cards and eye gaze typing to communicate. Her biggest wish was that people don't treat her like an invalid just because her body doesn't work and instead be patient and listen to her mind.
It seems like Sarah would watch a movie or have an audiobook? She seems to be bored at that party. Her face speaks a 1000 words. I don't know... :)
I know a girl with Rett's, and she is so much like Kendyll. I really feel for these parents whose children are trapped in bodies that just won't do what they want. The short life expectancy is an added heartbreaker. We see you, parents. You're troopers. You got this.
These mums are so heart-wrenchingly beautiful and caring towards their daughters. All the love and patience they have for their children is just phenomenally beautiful. As devastating as their girl's conditions are, they needed to be with these mothers. My heart truly goes out to them. What an inspiration to live as much and as lovingly as we can.
9:49 this is so painful to watch , it almost seems like she is trapped in her body, like she's aware of everything and intelligent but her body is malfunctioning
She needs to grow up and act her age!
Obama Binladon Please don’t judge people if you don’t know them. It’s very hard not being able to do the things everyone is doing. It’s physically and emotionally draining for them.
She needs to stop acting like that and get a job
Obama Binladon How is she supposed to get a job. Yes, she may have full mental function but there is basically not job that she could do. The fact that they hire someone to help take care and look over to just do basic functions, in fact proves me right. I’m not 100% justifying the way she acted, but think of how infuriating it would be to have to figure out how to communicate you basic needs without being able to talk or move your body in ways you want it to while everyone else around you can do these simple thing, almost without thinking.
Maya Miller thats a troll you're arguing with, his goal is just to make people mad and he knows it's BS, so dont give him any attention or any more of your time 😊
A teacher of mine had a niece with Rett’s. I always wanted to learn more about it because of how often she talked about the girl and how smart she seemed but how she couldn’t communicate that. This video gave me some really useful insight about Rett’s. It’s obvious that there isn’t much if any cognitive effect of the disorder even if it seems like that. Sarah seems like a fully cognizant adult who just struggles to make that known. These girl’s caretaker’s can see something in them that no one else can and their dedication to giving them the best life they can is truly admirable.
Poor Sarah looks so sad at that gathering. She may have Rett but she's 24, she has the mind of a 24 year old from what i've gathered. Take the poor woman somewhere else, she's an adult! Even if she's trapped inside her body
s i d e r a I wonder if she likes music. Put some headphones on her? So sad not knowing.
What I googled claims there is no way to test for intelligence with this
They were adults also.
Their eyes speak volume about their pain. Heart breaking.
That tattoo on the carers arm for Sarah makes me sad, but also happy. Push through everything sweetie and stay strong. Your work is amazing
Penguin Roll I noticed that too
Everyone saw that - how couldn't you notice? But what does it mean?
@@user-jq8qv4yx4h semicolon tattoos started as a subtle note to suicide prevention. That is, "she could have chosen to end her sentence [life], but didn't" is how they describe it, as that's how you use the punctuation.
It's to symbolize making that choice to keep moving, keep living, there's more 'story' for you just waiting... It's a symbol of hope.
You can look up Project Semicolon to learn more. It was started by a young woman who lost her father to suicide.
Hope that helps.
Lisa Moon Ok, thanks. I did look further in the comments and found a reference to suicide, so sort of figured it had something to do with that. Do you get the tat if you had tried suicide and failed?
A mother's love for her child just increases when your child needs you most
I admire you for your strength your courage but most of all for your tender loving care.
The way that you can communicate with your daughter is unbelievable, until you can see it for yourself. You are both incredible mothers
Sending you both good wishes and love from the UK 🇬🇧❤
Sarah is in there! The Mom is so right about everything she says! I wonder if Sarah would enjoy a set of head phones with classical music or some other genre??? I watched another family coping with their disabled child and that was their idea with the head phones
OMG.. the poor 24 year old Sarah. I couldnt believe that they put her in a class for mentally handicapped children when she apparently has normal comprehension. This would be like throwing you or me into a class full of kindergarden children doing their activities and expect us to have fun there doing that. No wonder she looked real real sad. A complete put down to her intellect.
I was wondering the same thing. If I was 23 and i had to be there...
It must be hard to figure out what exactly her intellectual level is when she can't control her body well enough to respond to what people say. I'm so glad she has the eye gaze tracking computer to help.
Have you ever read the book "Out of my Mind" by Sharon Draper? It's actually about that exact thing, only replace Rett Syndrome with Cerebral Palsy. It's about a very intelligent girl who's treated as mentally handicapped due to being unable to communicate normally, until she gets a speech device
You may find, unfortunately, that there are no other classes in the area, that Sarah can attend. Something is better than nothing xx
Tanya Brown I have to wonder if she lets her listen to music or anything stimulating. She seams so normal exeption of her care.
Could Sarah be having absent seizures when she stares vacantly into nothing?
That’s what I was thinking as well. I have a child that has them often
Yes there called petti Mal sezzures
Yeah they look like absence seizures to me. I have epilepsy but only ever have grand mal seizures - but the people I've met who have this type do this exact same thing, their muscles freeze up and they just stare.
> "Could Sarah be having absent seizures when she stares vacantly into nothing?"
My brain injury also gives me "grey-outs". Very rarely do these grey-outs happen to be black-outs (unconsciousness).
@@PixelTheExtraTerrestrial My son had them and the strength that was in his hands was incredible, one time when he was having a petti mal he actually went into the bathroom and turn the cold tap so hard he broke it, he had no idea that he was doing this, i thank god it was the cold not the hot tap. When he was having them i would just lead him gently to his room lay him down until it passed
Bless those poor girls. To an extent I know what it's like to be trapped in a body that isn't functioning correctly. I have seizures. Usually I black out during the seizure and don't remember a thing, but on occasion I will get one and stay awake through the whole thing. It is absolutely terrifying to have your body flail and flop and you have no control over it. These poor girls experience that on a regular basis. I'm glad they have parents that really love and care for them.
Edit: I saw that the older girl used medicinal cannabis. I wish it was legal in my state already. Weed helps my seizures more than the meds I am prescribed. It works wonders.
Jennifer Dixon yes! I also have seizures and I also get trapped in my body. My eyes will be open but I can’t move at all but make noise. It’s terrifying but I know it’ll go away, I can’t imagine what it’s like for it to never stop. It’s must be so hard for the parents and girls.
I second the weed use also! If I didn’t have weed my last few years would be miserable. Thank god is legal in my state. I hope it becomes legal for all Americans! Best of luck (:
Jennifer Dixon CBD oil is legal. I get mine from a wonderful company in Kentucky. They ship anywhere.
It has only trace THC, won’t get you high.
If you’d like more info, tell and I’ll post some links. ❤️
@@JaimeMesChiens More info on that would be great!
Jennifer Dixon bluegrasshempoil.com is a family farm, processing plant, and laboratory on site. The THC is within the farm act limit.
I don’t want to say more here, but you may email me LibbyHussein@aol.com and we can certainly discuss further.
I've never heard of anyone else with conscious seizures like mine. Makes me feel a lot better about everything. Thanks so much for commenting.
What amazing mums , dad and caregivers. Your all amazing. As for the girls “ your awesome 🤗”
My 18 year old son has cerebral palsy, which is obviously different from Rett Syndrome but I can relate so much to the moms when they said that they read about the syndrome and just knew, and that they were just happy to have a diagnose. We've been there too.
Sarah situation is so heartbreaking for all. You can see her frustration and the caregivers too.
Sarah is an angel, beautiful, intuitive, even across the screen her eyes are so expressive, she is phenomenal and these women who take such loving care are angels too! This video has really left me with strong emotion of love, thank you for sharing a part of her life for us to better understand and be more empathic.
They must have maintained all intelligence. They seem to know they’re trapped. They’re frustrated, clearly, because they can’t express anything. And you can see it in their eyes. That knowing and context is there. My god, it must be like a living nightmare.
...
Jane Hakanson that my friend, Nick Chisholm. He’s a weight lifter.
He can communicate and recently got married. He’s a very cool guy.
He incurred a sports injury that caused damage to the area of the brain responsible for speech.
He lost his ability to speak, but not to communicate. I love that guy!
Murder most horrid
@Jane Hakanson
Https://th-cam.com/video/nQYfvLTId0Q/w-d-xo.html
> "Locked-In Syndrome: Nick Chisholm
"
> In 2000 Nick Chisholm had a stroke after a game of rugby.
> It left him with locked-in syndrome which means his body is paralyzed but his mind is aware and alert.
Unlike most stroke victims, Nick was not self-inflicted by poor diet, poor exercise. It is similar to my Traumatic Brain Injury.
These videos are both from New Zealand.
Rett can affect intellect. Some people with rett have a severe intellectual disability and others have normal intelligence, and of course there are the in betweens.
I work as a caregiver for a 45 year old with Rett syndrome. She too bites her thumb and wrings her hands. She is non verbal but very intelligent and i can ask her to do something and 40% of the time she can do it. She also walks and swallows her pills on her own. She can hold a glass to drink but i have to feed her and forks and knives or even gripping food is too difficult for her. She also sleeps 12 hours a night with the help of trazadone. It really is interest the similarities yet vast differences individuals with retts can have
I suppose it is pretty tough being a caregiver. it does pose a lot of challenges. But I'm sure once you come out of all it, you'll learn to become stronger, and stronger for it too. I'm sure you'll learn to love what you do, in time. Faith and patience is the key to all situations. You as a caregiver, God bless your kind soul
Wow, your patient can do a lot! I work as a night nurse for a teenager with Retts. She cannot walk and has no voluntary movements. She pretty much just grabs at her hair if she’s bored or agitated. ( which is most of the time) And she wakes up several times most nights and whines until you take off her leg braces and Bipap. I don’t know why her mom doesn’t want her daughter to take any sleep medication. Trazadone sounds like it works really well for your patient. I pretty much have to swaddle my patient to keep her arms from flying all over place and her banging them against her headboard. Or I weigh her arms down with pillows to keep her from rubbing her eye or pulling her hair out. Her mom says there is going to be a cure for Retts in 3 years. I really hope so!
Katrina Olsen Suggest for her mother to have a weighted blanket when she sleeps. These used to be crazy expensive, but the last year or so, they started to be available from more shops online, and the price has dropped considerably.
@@katrinaolsen2444 Please minimize messing with her arms as much as possible. Pulled hair is an aesthetic concern whereas the hand movement is a sensory stim they NEED to do to process the world as with other autistic-type motions. I am someone who has these kinds of motions and people are far too hasty to underestimate the neurologial harm it does to interfere.
Nina Sørum She has a weighted blanket. It doesn’t help.
Hey mom,.. When your aide is there..aren't you supposed to take a bit of a break for yourself? What you do every day is very bearing on a person..Bless you... Your daughter knows how much you love her...
My cousin has a set of fraternal twins, Michael and Mikayla. Mikayla was squashed in the womb, and suffered oxygen deprivation. She's had Rett's since birth, her brother is perfectly normal.
She's such a beautiful little girl. They're going to he 7 soon. Mikayla also chews her hand and has now started having fits, poor sausage. It's very hard on my cousin and his wife.
We had a fund raiser about two years ago, to get her a special machine that tracks her eye movement, I stand corrected, but I think it's for communication, which they managed to get for her.
Mikayla Meneses ❤🙏❤
Rett Syndrome is not caused by oxygen deprivation of the brain. And Rett doesn’t happen at birth. Rett children appear normal at birth. And a lot learn to walk and talk. But then they regress. If they have Atypical Rett, they may continue to walk and talk some. It sounds like your cousin’s daughter had a birth injury that has caused her Brain Damage.
@@konjurekatrina I never said or implied that Mikayla's Rett's was caused by the oxygen deprivation, it is a statement on it's own, hence the full stop after the statement.
Children with Rett Syndrome *_do_* technically have it from birth, the mutated gene is already "there" in the body *_from_* birth...I dare say developing during gestation (since tests for the gene can be done prenatally). It's not like it gets contracted from someone else, like a cold or flu virus or something, they don't suddenly "catch" Rett's - the way you make it sound. Since a baby doesn't really attempt to do/can't do and isn't aware of much, within the first few months of life, Rett's is overlooked. They look, and appear to be, like other babies. So technically, they are *born* with "unseen" (if you will) mutated gene...and the symptoms manifest slowly during infancy, from about 6 months old.
She didn't walk, talk or sit up on her own, but did communicate in her own way and so, wasn't "brain damaged", she was alert and aware.
Anyway, very sadly Mikayla passed away last year in April, aged 7...R.I.P. beautiful girl 💜💜💜
@@veesea8889 I’m so sorry that Mikayla passed away. That must have been devastating for everyone involved. I know that Rett is from a mutated gene and isn’t something a child “catches”. What I meant was children don’t usually show symptoms of Rett until 6 months to 2 years old. I have watched A LOT of parents describing their children and how their child was diagnosed. ALL of the parents described that their child SEEMED normal at birth. And that their children had started to talk or at least say words. And many of them started walking as well. They ALL said their children noticeably regressed. From what you described, her family were aware from birth that all was not right with her. That is not how any of the parents I’ve seen discussing their children described their child. They all thought their child was developing normally until they noticed their child started regressing. And just because someone has had a brain injury, it does NOT mean they aren’t alert and can’t do anything. My cousin’s husband was in a motorcycle accident when he was 17. He spent a month in a coma. And he has a permanent brain injury AKA brain damage. He can walk, talk, cook and do a lot of things! He fathered 4 children and helped raised them with my cousin like any other couple raising children. However, he lost his sense of smell because of the accident. So he didn’t stay alone with the children when they were infants because if there was a fire, he wouldn’t be able to smell it and take immediate action. He can drive locally, but highway driving makes him dizzy. He needs help staying on track when they are doing something that has a time table because he gets easily distracted. Two of my cousin’s children have graduated from high school and are at 4 year Colleges/Universities. He is a wonderful father who raised wonderful children. Again, I know what causes Rett. I was a Nurse for a teenager with Rett. I did a lot of reading about Rett. I also watched families talk about their children who have Rett, right here on TH-cam.
I have two children. A girl 20yrs old ,and a boy 18yrs old. My son has autism. It’s been incredibly hard for my daughter.Their father died when they were babies. It’s affected her in such a bad way. I’ve had to spend so much time with my son. She moved out with her boyfriend and his family when she finished high School. I miss her It’s better for her though. We keep in contact, not much though. She’s very bitter about how hard her life was with him. That 4 yr old Kendal’s little brother reminds me of my daughter sitting in the background watching while my son took most of my time.😔
So deeply, darkly & profoundly heartbreaking...I long to reach out to Sarah's precious, loving Mother & hug her....To show support for her, Sarah & other Rett families...
Thank you for sharing these stories Attitude. They're tough to watch & the wonderful families are even tougher !
I love that you allowed us to see Sarah, I can relate to a certain extent. My son has Spinal Muscular Atrophy, but the difference is for me and him as that he is totally verbal. So I can only imagine what it would be like to have to learn a totally new language w your daughter. BC I have seen so many other kids w disabilities, it makes me feel so lucky that Sawyer has as much as he has but it also makes me more aware and feel for parents that have soon much more to figure out... honestly though it makes me a better person bc I can see all of the issues that other patents have to figure out.... they are in thére and their brains are just as alive.... I wish and hope for all the strength to you and your guys to be able to learn how to understand what they are trying to tell you/us..... I just wish all of you all of the best. No matter what, they are people and they know what they want, they are not lesser than any of us, and actually are usually better humans than most of our population.
The families are so strong. One of the (many) reasons I don't want kids is that I just couldn't care of a special needs child, already a "normal" child would be too much for me.
Ditto.
I understand.
I’m from NZ and to know these 2 girls are from here to makes me sooo sad. I hope one day there’s a cure for this debilitating disease!
19:15 what a tearjerker! It’s beautiful to see sweet little Kendyll express happiness! And her dear mommy’s reaction is one that I know firsthand. 🤗😭😊
Not to underestimate the sorrow of this situation but don't put your feelings onto this young lady. Her face is not expressive but her eyes shine through with soul. She seems to be enjoying parts of her life and not others. Isn't that the same as all of us?
Thankfully she has a loving mother and a skilled carer who are so sensitive to her wishes. And she clearly indicates what she wants- amazing spirit.
27:46 broke my heart, she had absolutely no interest in what was going on and would much rather do something else than look at butterflies and roam around under a rainbow sheet. I really hope she’s doing fine and has a fun and fruitful life, regardless of the circumstances.
I'd feel humiliated and angry if I were treated like I was 6 at 24 years old too. Sarah seems to not only be fed up with the pain of her condition but moreso of how people around her patronize her all the time as if she had no intellect. Help her live an actual adult life because from what I gather she's begging for it.
Sarah doesn’t have the maturity of a normal 24 year old. And she’s not being “patronized”. Her mom said she has no regular sleep schedule and she apparently doesn’t get a whole lot of sleep. No living creature can function without a regular sleep schedule. Her mom also said she has chronic pain. Which is distracting to Sarah too. Sarah very likely has normal intelligence. But intelligence and emotional maturity are not the same thing. She isn’t going to have the same maturity that a person who isn’t profoundly disabled has, because she cannot do anything for herself. Girls and women with Rett don’t have any control of their muscle movements. Particularly their hand movements. Generally the only things girls and women with Rett can do is pull their own hair, scratch at their own faces, and bite themselves. Most Rett patients have arm braces put on so they won’t hurt themselves.I was a Nurse for an 18 year old girl with Rett Syndrome. She received a lot of physical therapy and she was fairly healthy. However she didn’t ever seem like she had any interest in anything other than a couple of different tv shows that were created for preschool age children. I tried to get her interested in shows that were for older children and teens. And she’d scream until I put on one of the tv shows that were created for toddlers, that she liked. I’ve seen videos of other girls with Rett who are really responsive to their families. And it’s very obvious that the girls love interacting with their loved ones. That wasn’t the case with the girl I took care of. She sometimes would laugh at the show she was watching. But that was the only time I could tell she was enjoying something.
It's unimaginably difficult to deal with this condition and seeing your baby girl becoming more and more trapped. These mothers are saints.
And for Sarah she knew she used to be able to do so many things. She was learning to talk, could walk and run, and now can’t do most of those. She’s had to watch herself lose so much and not be able to stop. At least Kendall had it from a much younger age, not that it made it that much better, but the year and 1/2 between when they both had they’re first symptoms would definitely make a difference for them later on in life.
Beautiful girls , you can see the intelligence in Sarah’s eyes , what great people looking after you both . Xxxxx
All of those strong women..... greatest respect for all you do. You make me believe in humanity. Thank you!
Gosh. It was heartbreaking to see Sarah get so frustrated that she was screaming. It’s so sad to watch. I wish her the best, she is a smart and beautiful girl.
Bless the caregivers and parents and girls. You are all an inspiration.
Sarah should consider going to Camp Barnabas in the States, if she's able to. It's a camp for disabled people, and I feel like she would really enjoy it.
My son has severe autism, he said mom, dad, dog and lost all language and is completely nonverbal, he is 3. These moms and stories help so much to know I'm not alone even though their stories aren't just like mine to know such loving families who have difficulties are doing their best and happy overall makes me happy for what the future holds for my family and my son.
WhiteGirls WearWigs2 that must be terribly hard at times for you. I have a lot of admiration for moms who have children with disabilities and their strength. My heart goes out to you. Just know you are not alone. There are other moms out there dealing with the same. Please do not forget to take care of yourself too.
sandi kieffer thank you so much for taking the time to say that it's so nice to hear someone sympathize. Most days are extremely hard and i had no idea what kind of patience and love I had til I had my special needs child. Its like I live in a foreign world all the time it's hard to see other families enjoying their lives clueless to how blessed they are. My son is such a loving child though through all his struggles. I am blessed because he is so innocent and doesn't have a care in the world. He doesn't know any of the worlds worries which is great to me.
Your son is not the only one who is special in his family. You are just as special. He is a celestial spirit who doesn't need to be tested here because of how valiant he was before he came to earth. If you could see the angels that are around him (and Sarah) wouldn't that be great! Kudos to you! (I hope this didn't come across too religiousy, I just wanted to give you a great, big pat on the back.)
Check out Fathering Autism, I know their videos have helped many. Best of luck Ashlyn, stay strong!
Airell Skye yeah I love their channel they are a great family their daughter abby reminds me of my luke in some ways
I can't finish watching this.
My heart can't take it.
I hope the best for them, they don't deserve to live like that.
I'm glad they have immense love from their parents and caretakers.
Just wow. I am floored at how these families deal with the highest levels of adversity. Such perseverance and strength.
sarahs mom seems to speak to her like a child, i understand thats hard not to do but its sad - she’s completely there cognitively and it must be so frustrating to be talked to like she isnt 24
I mean she’s her mom so maybe she knows best how she reacts to different ways of speaking
They are not "all there cognitively" in the way you mean. Intellectual disability with a developmental age in the toddler range is part of Rett.
I feel so sad yet so grateful for her. She must have felt so lonely and trapped and unheard, for so long until she got the eyegaze device. I hope more and more girls can get this same device and finally get to say and do what they need. Thank you Sarah
Thank you for sharing your stories. They are beautiful people and you are doing such a great job of raising them.
The U.S. doesn't offer hardly any help, there's no respite care here. And honestly your schools seem to really engage all students and give as much 1 on 1 help as possible. I'm impressed with what you do get help with but i can only imagine how much more they need. These mothers are showing thetrue meaning of unconditional 💘 love. Good bless them all and the kids.
Sarah’s such a beautiful young woman & you can see how intelligent she really is. Retts is such a cruel disease, the fact that the child progresses normally in the 1st couple of years is why it takes so long before the correct diagnosis is given. You can see Sarah’s mum blames herself even though she knows it’s not her fault that she didn’t do anything wrong, the way she gets upset still shows she thinks she caused the problem. My heart really does go out to her, it’s got to be so hard for them. It’s very like the “locked in syndrome” in many ways.
I was surprised when Sarah's mum said having eventually a diagnose of Rett syndrome was terrifing but a good thing, because at least it wasn't her. Surprising because if she was the problem, Sarah would have been traumatized but not so extremely affected. It would have been better for Sarah if the problem was her mother and not the Rett sindrome!
how cool that she got a Tobii Dynavox eyegaze! my five year old daughter has a severe case of retts and has been using and eyegaze device at therapy and through her school program but w ecannot afford a device. We have been fundraising but have decided a wheelchair mobile vehicle was priority. Hopefully we'll get one eventually. www.gofundme.com/edenswheelchairvan
Kayla Suitor, where do you live? My bf (daughter with Rett) was able to get insurance to pay for her Tobii dynavox. He worked with the school system, her MD, and the Rett program in which she was involved at Boston Children’s Hosp.
If you’d like more info; if I can help at all, please email.
LibbyHussein@aol.com
I have names and info on some Rett resources that may be of assistance ❤️
Have you guys looked into one of the letter boards? While mobility is important, communication is critical to normal brain development.
I know its not what happened but at 24:50 it sounded like you broke her little leg. These sweet girls are so incredibly lucky to have such amazing Mamas and support people!
Sarah has a gorgeous smile. Her eyes just light up! She's obviously quite intelligent.
I like how these parents are supportive even if they children have go through this.
What a wonderful, calm, patient mother!
I used go work caring for a woman with Rett. Although she had a lot of help, seeing someone trapped in their own body like that is horrible. I hope they find a cure soon 🙏🏻
My Granddaughter was just diagnosed with Rhett Syndrome and Ogden Syndrome she's three and we have no idea what to expect no one in our family that we know of has anything like it my sister is on the Autism spectrum but that's it
Seeing Sarah in her sunglasses melted my heart for some reason. 💖
My love goes out to all Mothers and carers of the world, you help a lot of families keep it together, God bless yous ALL.
Sarah just seems sort of sad
idk it seems so odd to me that she has dyed hair. she can't ask for her hair to be dyed so why did they do that?
Sarah seems more-than-sort-of sad.
small pener Why not? My brother is nonverbal, has severe autism, and has Down syndrome but he still rocks a badass, easily-manageable mo-hawk lol
@@galaxysnot6276 I just mean....how do you know he wants a mowhawk? And how do they know she wants dyed hair? I'm not trying to be rude I'm just intrigued! Idk your brother but maybe he can gesture in some way that that hairstyle is what he wants, but I'm not so sure about her idk idk
@@likklesmellyduck if you watch the video you'll note that it's repeatedly said that Sarah is intelligent. It's likely she wanted the dye. Just because she can't verbally ask for something doesn't mean she can't ask for things. I mean hell in the video she asks to be taken out of her chair and back to her room.
Sarah is a beautiful, incredible girl, and I really hope that we can see developments and improvements soon that bring more depth and happiness to her life.
It is so cruel for the Mum to watch her daughter's suffering... God bless these families pls!
Well, it does say in the Bible that God is the one who creates all the evil, so... pretty sure he's not gonna fix this, if he's the one who did it. That little book also says it's wrong to kill, so the only option the parents have at this point is to help their children the best they can in their short years on this planet.
My aunt has rett syndrome. She is almost 40 years old. It's a rocky road, she has been hospitalized twice in the last 6 months because she got sick, then once with congestive heart disease. She can't walk much anymore, she gets tired easily, and a lot more.
Such a lovely insight into a very sad condition. Really beautiful children and wonderful parents.
I worked with a little girl with Rett and she was just a doll. So sweet and beautiful.
Beautiful mamas oh so definitely chosen by them. I loved seeing this and the love and attention their mothers provide. Great job for all of you. Tears, I felt the love so thank you for sharing. 💕💕
God bless these care givers.
another great story....Thank you
The mothers r just amazing wow I think they r just lovely
What amazing mum's.
These mums are amazing!
What a dreadful illness. That lovely girl knows what she wants but so difficult to make herself understood. Trapped in there bodies. I pray they find a cure soon. Such lovely children and families. Xxxxx
You're a strong mama... May God give you the strength Amen!
11:08. It’s just heartbreaking to watch someone be trapped inside themself like that.
It's really heartbreaking
These mothers are a gift to these children, the level of patience they have is quite extraordinary!!! They are such wonderful loving parents.
Sarah's cat makes her smile so big and bright, awww.
Oh sarah my heart. I’m sure that when your soul passes into the next life you will be able bodied and able to exceed everything that your mind imagines doing.
Wow, just such strength and bravery and beauty from and to all those girls and their families, totally humbled.
Wonderful mother’s to beautiful girls. Such grief and loss for the families. ❤️
This is sad these girls are robbed of a normal life. There moms are amazing.
True. Getting that diagnosis can take a very, very long time. And once you get it -- it's bittersweet. Relief to know but grieved because you do know.
This is not only very sad but also a very cruel disease. 😢 ❤
I have something to say, we should be extremely thankful that most of us are diagnosed with any of these diseases that are so severe. And be thankful that we have fresh water everyday its important and its not magic. Ok thx thats all I wanted to say XD this video gave me hope.
These Moms are rockstars
It is amazing what they have done with technology these days like the communication device by using her eyes.
Do you have any palliative care doctors in your area? I have ms, and moderate to severe pain has been one of my worse symptoms. I started going to a palliative care doctor for pain management. I have been taking methadone for about 9 months now. It has been very helpful.
My daughter has Retts and my heart won’t stop bleeding
chulaida I’m so sorry.
💔💔💔
Are you Dr Land from MD?
I can only imagine after watching this. Bless your heart. Praying for you and your daughter
chulaida if you need someone to talk with, please feel free to email me mavanesi@yahoo.com hope I can help in some way by being a listening ear
I'm so sorry for your heartache.