A Child with Rett Syndrome (Esther the "Quiet Queen")
HTML-код
- Опубликовано: 13 мар 2024
- Esther is diagnosed with Rett syndrome, a rare genetic disorder that impacts the brain. Her family refers to her as the "Quiet Queen" because she is nonspeaking yet still loves to be involved and included. Esther's family wants others to know that she is smart and can understand what you are saying.
Support SBSK at / sbsk
Help Cure Rett syndrome at reverserett.org/
Esther's Family's Blog: / quietqueenesther
Anybody who would like to learn more about Rett syndrome, or contribute to finding a cure, can do so at reverserett.org/
that's amazing! :D Keep it up!
Hi Chris love your videos we can meet you guys I can be your videos can we make TikTok videos?❤❤❤❤❤❤ ❤❤❤❤❤❤❤❤
❤
Muscle contractions and cramps can be caused by gallstones. An abdominal ultrasound examination would be worthwhile. I wish you all the best! 😊
@SpecialBooksbySpecialKids There is a newer approved drug for Rett Syndrome that goes under Daybue that is FDA approved for Rett Syndrome patients 2 years and older.
The heavy breathing is normal with Rett Syndrome. Our neurologist has said it's "neither good or bad", just a trademark of R.S. So, Esther is not in distress when she breathes heavily.
I came to ask this, thank you.
Thanks for answering my question, I was wondering if she was anxious because I know the family would have breathing support if she needed it.
@@daydream1066 we often forget to explain her breathing because we’re so used to it! But yes, she is ok when she breathes heavily.
Thank you for sharing this. I was wondering that!
No problem! I would have been concerned, too, if I didn't already know.@@laurenferrell6013
This has me all emotional 😭🥰. My aunt had Rett syndrome. She passed away at 31. My grandma took such good care of her, and as I got older I helped take care of her too. They are so right. Rett syndrome girls speak with their eyes 💜. I miss my aunt every day. She taught me so much. I think it's because of her I am a good special needs mama to 2 with autism 💜
My aunt was typically developing until about 4. At that point she quit talking altogether. The over the next 4 years she reverted back to near infancy. She stopped walking, using her hands, etc.
❤❤❤you're an amazing niece, and now mom to our little spectrum, bright light children❤
@@ShilasSpellboundCreationsWhat?? 😢 I'm so sorry that happened to you
im so sorry to hear about your aunt your such a sweet person and your kids are lucky to have you
im actually on the spectrum of autism and so is my nephew though he isnt as verbal as I am but ive always been close with my nephew
even though i have two other nephews and a niece -- ive just always been close to paul the most. I finally got my answer when I was diagnosed with autism at just 33
ESTÁ CLARO EL PAPEL DE LA HERENCIA EN TU FAMILIA.
Not only you interview special needs people but also give their siblings time and space to say whatever they want. I can imagine that it can be tough to be a special needs kids sibling every now and then though not intentionally. I just love how everyone gets the chance to be themselves on this channel.
He’s wonderful with these kids. And, all of the interviews done with little ones, bigger ones, and adults are done with such grace.
Yes, absolutely! My little brother has autism and an intellectual disability and has always needed a lot of support and attention. I regret so much that none of the professionals that interacted with my family because of him ever saw my sister and me, we kind of got left behind. So yes, I appreciate it soo much when somebody sees the special situation of siblings of children with disabilities!
my brother has kabuki syndrome and it's shaped my whole family's life and I admit sometimes it's overwhelmingly stressful. my biggest problem is never having friends i could go to that understood the struggles
Absolutely. I love how his questions don’t seek a certain answer, but allows the family to share their story.
I just know if the video didn’t cut there we would have 12 minutes of the sister tryna tell one of those long winded toddler stories lol. All the kids in this video are adorable.
Definitely! I love how they accept Esther for who she is and can share what’s on their mind.
My sister has Rett syndrome & every individual I have ever met with the disorder is the kindest, strongest, and most silently intelligent human I have ever met. 💜💜💜💜💜
Sounds like she has a great sister!!!
@@mistytaylor8166 Brother * 😅 but thank you so much, she's our world
So does my sister ❤ I swear half my city knows her because of how friendly and sociable she is. She taught me to feel joy more often in little ways. She’s also very intelligent, so much so that she pulls the wool over peoples eyes so they do stuff for her that she is perfectly capable of doing herself 😂 sending love to you and your sister ❤
Definitely! My daughter has Rett and she’s absolutely incredible. Her teachers have said they would be happy to just watch her go about her day as she’s just so happy 💜
God bless you and her.
OMG ‼️ MY SISTER WAS DIAGNOSED WITH RETT SYNDROME‼️
This is the first time I have ever seen another with syndrome like my sister. She was the only one in NY at that time to be diagnosed.
❤❤❤❤ I hope that this brings joy and hope to you and your sister!!! Lots and lots of love!!
@JinxMarie1985 Thank you my dear. Unfortunately, she did pass away. 😢 I'm just so happy to see this. 🌻
@@Lin.Stone. Oh my... I'm so so sorry hun. I'm sorry. I know that feeling. I'm going through it now. Grief is... hard. And a long journey. May she rest in peace.
@@Lin.Stone. 🌹🌻🌿🌼💐
wish you two all the best for your loss ❤ love ❤
Hearing her breathing really makes me feel breathless. It's wild how it can affect someone psychologically
The heavy breathing is normal with Rett Syndrome. It's neither good nor bad, just a hallmark trait of R.S.
thank you for this reply (if true, which i assume it is; i do believe you). i was wondering if she was having trouble breathing, trying to communicate, or just being silly and playing around like the kid she is.
My parents told me I was the best kid ever, but I'm more than happy to pass down this title to Esther. Esther (And all her beautiful family): You rock!!!
I also noticed her reaction when she heard how loved she was. She's very precious and her sentience, awareness and consciousness shouldn't be undermined. She's a lovely little girl, absolutely beautiful and I believe she truly understands how loved she is.
My best friend Keira has Rett Syndrome, literally the sweetest girl I’ve ever met. She’s so kind and caring and I feel like she’s the one girl who listens to me! She’s so amazing and I love her to the moon and back ❤
How sweet! How is she doing?
@@Heathernd she’s doing very well! I actually saw her yesterday ❤
Mom of a 2 year old prader willi princess… those children are such a gift.
Used to watch SBSK long before the birth of my child . Now i can really put myself in the shoes of these parents.
From shock at first and disbelief … Now i feel it is a privilege to have my lovely girl who i totally adore.
💕 Iam going through a similar thing with my son who’s about to be 14. Been dealing with since he was born. His tests came back negative for Prader Willi and anything on the chromosome end of the genetics within last year. . His symptoms are like prader, with the never being full , the behaviors that go hand in hand . But then there is a period he knows when he’s full and stops. He’s intellectually delayed, has a severe speech disorder called CAS (childhood apraxia of speech) but his type was he never developed the muscles that are in your mouth to help u speak. Was diagnosed at 2 and half and also has processing sensory disorder. Both eyes became severely crossed and gotten surgery last year. We got an another genetic testing done that deals with the other side of genetic testing and it came back that 2 of his genes that causes obesity are abnormal/mutated. Out of the 2, 1 of them causes the problems my son has. Now I’m in the process of being tested to see if I’m the carrier, who passed it down to him and hopefully we get a name/diagnosis so we can get the proper treatment for him. It’s a hard road for us mamma’s, but we got this and u stay strong.
@@brandiehammondlook into pica mama and aprexia and pica are coman combitys with autisum im autistic with pica and they thought i had parda wili as a child my mum had ur type of tests done same type of results ended up being pica with the autisum all linked to sensory oral sensory ❤
@@brandiehammondpica can also make parada wili worse and harder to deal with also if u have both
@@PixelTheExtraTerrestrial it definitely can. I used to work in a group that only helped kids to adults who has Prader Willi.
How is your daughter doing?
I am Maddie Rae of Sunshine’s Gramma. Great job to this beautiful family. Rett Syndrome changed our lives. The joy of being Maddie’s Gramma is beyond comprehension.
Sending love to our fellow Rett Families!! 💜💜💜
How is Maddie doing?
I agree! Hadley is going to London in August to see her favorite singer, Taylor Swift! We let her do everything that a normal 10 year old does!
@CulviesDogMom good for you!
@@HeatherndMaddie is doing really well!! Thank you for asking!! 💜💜💜
She looks like a supermodel! She is a GORGEOUS little girl!
I love that she shared the Book with No Pictures with Chris. It seems like a book that is right up his alley.
Yes, it brings out the best kind of silly!
I've educated myself about Rett syndrome after watching this. I think Esther could be a model if she wanted to. Gorgeous child, wonderful family.
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
I think the thumbnail makes her look like a model 😊❤
She looks like Drew Barrymore when she was a little girl❤
She's gorgeous!
it does! I thought the same thing!❤ Esther is a beautiful little girl🥰
Totally! She looks like a doll hehe
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
Her laugh around 9 minutes in was beautiful to see. Very clear shes cognizant of her family and knows shes loved. Hope she is being read how many people around the world are seeing her and wishing her well. Mam and Dad, her siblings, her grandparents- youre awesome. Esther, a big hello from the UK here!
My daughter also has Rett syndrome 😭❤️esther is just the cutest such a beautiful family
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
Esther is the cutest quiet queen!!
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
What precious siblings! And the amazing neighbor girl who hangs out with Esther! Melt my heart!
Olivia is a precious soul , Esther adores her ❤
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
When her dad is talking, i instantly know where the "smartness" came from
My sister has Rett Syndrome, since she is older than me I've been used to this syndrome my entire life. Meeting up with other families who have a member with Rett Syndrome is really helpful for both the parents and the siblings ❤
Both my sister and Esther have so much life and joy in them!
Esther has such a loving family and she is very loved
It makes all the difference!
I love seeing the siblings perspectives. My kids have always been loving, protective, and kind towards their sister despite the fact that they have unselfishly had to make sacrifices of their own as kids growing up. The guilt one feels as a parent is difficult to navigate, but so worth it. As a special need family, you have a unique opportunity to teach compassion through action. I know that sounds wonky, but trying to tell others what it’s like to have a child or family member with special needs IS exactly like reading a book to them without pictures…… so great choice of a book!
I'm a pediatric nurse and I'm so thankful for being able to take care of a sweet girl with Rett Syndrome. Each day I get to spend with her and her family enriches my life and I'm glad I can help make a difference. 💜 😊
Thanks for doing what you do!
She seems like a doll baby ❤
What a beautiful child. Lovely family as well.
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
Just the other day at work, I met another young woman with Rett syndrome, and my heart went out to her and her parents. My heart is with anyone, young or old who has special needs. I love them all. ❤
Esther reminds me of A very young Brooke Shields. In other wards she is beautiful. I have always loved children and this little girl has so much love to give and receives it right back. Such a loving family.❤❤❤❤❤
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
I was just about to write the exact same thing, her resemblance to a very young Brooke Shields. Such a beautiful child.
What a cute little girl!!!
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
Watching the siblings love on her is precious. The sweetheart neighbor is a a wonderful friend.
A child’s love is so beautiful.
Her beauty and the love of her family brought me to tears. She and her family are earth angels...so is Chris.
Her golden hair makes me think she was specially made.
she's beautiful. In the thumbnail, she looks like a 1800s portrait. ❤
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
esther’s community and family is wonderful. olivia seems like a good friend :)
Love Esther’s reaction to Grandma and Grandpa ❤
Yes, she really lights up!
So much love , beautiful ❤
I just want my husband and me to be friends with Esther's mom and dad. And our girls to be friends with Esther and her siblings. They seem like such wonderful and intelligent and caring people. ❤️❤️❤️ My grandmother's name was Esther and she passed away a few years ago. What a special and beautiful name.
Your channel has got to be one the most pleasant and humanistic there is. It makes people realize that it is good to be kind towards those who are ''different'' in some ways, but nonetheless, alive and parts of our lives. Thank you for your channel.
It’s amazing how simply giving people a voice brings out their humanity.
You'd like the youtube channel called Clint's Reptiles if you like animals ♡ same energy
That little girl Olivia is a gift from God for Esther. What a special little girl to be a friend to a special needs person at such a young age. Olivia’s parents should be so proud of raising such a special little girl!
Agreed! Olivia will always understand children on a deeper level, I think.
I love this! My daughter has Rett Syndrome and she loves books and music soo much!
SBSK, thank you for what you’re doing
Amen!
Beautiful little girl.
I love it when the whole family is involved with these videos. I love when the grandparents even want to be included. It really shows the amazing support system these awesome kids have.
Esther has some of the best hair I've ever seen!! The siblings always get me -- my triplet sister had severe cerebral palsy and passed away in 2005 at the age of 9. What a blessing these kids are to each other.
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
He gives me hope that there's still good men out there and maybe I'll find one one day. 😢💜
Esther is an absolute sweetheart. 💜
I knew a couple who went to my old gym who had a daughter with Rhett syndrome. It takes *a lot* of effort as parents/caregivers to tend to certain special needs, but as the parents in this video and those of the little girl I met show, the rewards are so much worthy of the effort. These children look so bright and full of life, and their happiness is a testament to the hard work (and no doubt plenty of worry and sleepless nights!) of these fine parents.
It’s amazing how rare this syndrome is yet often I run into other families. I once ran into another pRETTy family at the beach!
Her Parents and Grandparents and siblings and Olivia are amazing. Esther has a huge support group
These kids are adorable
They really are.
I worked with kids with Rett Syndrome in Early Intervention. I truly believe they understand everything and are intelligent but just can’t get their words out! It breaks my heart!
The girl give her strength, courage and to follow her heart amen.
Amen!
Aww Esther is a ray of sunshine. Her siblings are so sweet too. May God bless this family. And every child.
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
Such wonderful siblings. May God shine down his love, and grace and healing touch on Esther and may she live a long, happy and fulfilling life.
Amen to healing!
Rett syndrome is so sad, I took care of a little girl with Retts syndrome, she was a little older when parents started noticing she would just drop things. You have to be patient with these children for sure.❤❤❤❤
It's sad, but I've never seen such pure joy from a little girl!
Mmmm... I guess it's sad that she can't always respond but she seems happy and joyful and smiley and silly and clean and well loved. Not sad at all.
She’s so pretty and adorable. Such a shame this happens to us, that smile when Chris was reading to her made me smile. Must be so hard knowing she understands what’s going on or talked about but struggles to respond. Amazing family and brother and sister.
This is one of the best channels on RUclips. So important.
Agreed. I’ve been following it for years.
What a wonderful Family ...she is precious!!!!!!
She doesn't need to talk for them to know how she's feeling. I love it. I had a friend who couldn't speak and was wheelchair bound (Her mom and dad were in a wreck and she was in the car with them but at the time there was no carseats and she was a baby) but every time she saw me she'd get excited by waving her hands around and squeal which to me meant "My buddy is here" and I loved it.
What a beautiful family! I loved Esther and her beautiful smile!
Also I loveeed seeing the siblings they're so cuteeee thanks for letting them talk about their stuffed animals haha
My older sister Jodi has Rett Syndrome. She will be 47 later this year. My parents cared for her at home until December 2022 when her needs surpassed what my mom could handle. She is doing well living in a nursing home. She is a beautiful woman who has taught me a great deal about unconditional love. So much love to all the Rett girls … and boys 💜💜💜
Thanks for sharing. She has a great family, too.
Olivia, her friend, what an amazing caring girl! Wow. Children are incredible sometimes!
Beautiful little girl. My heart goes out to her. Her heavy breathing is not fair. Someday she will have a new body.
You're referencing Heaven right.
@@SFayeLewis yes
So nice to see the warmth in her expression when she is interacting with her family. This kind of support is so very important for her personal growth 👍
Absolutely! I pray for all families to be so loving.
She may be the most beautiful child I’ve ever seen and she probably so beautiful within that this world just couldn’t handle it.
What a beautiful family! God bless precious Esther and her precious siblings and her whole family. ❤️
Family makes all the difference.
She is adorable!❤
Three beautiful children, parents and grandparents….there’s tons of love in Easther’s world ! Thank you for sharing your family’s story with us. ♥️
all the kids are adorable
What a beautiful kid.
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
I had a patient with Rhett syndrome. She was in her 30’s and looked so young. She was wonderful and her Mom took such great care of her.
How is she doing now?
People wouldn't understand how blessed they are to have her. They see different we see blessed love and an amazing person, almost like autism a disorder that a parent is blessed with. Pay attention to the little boys answer when he asked what's so special, He replied she was sweet. He couldn't have described it any better.
Yes! I often hear “she’s so lucky to have such a great family” but WE are lucky to have her!
Esther has beautiful hair!! Love her bows too❤❤❤
She rocks the bows!
The whole family is loving and adorable!❤
It makes all the difference.
You made me smile and cry. As a Grandmother to a 10 year old granddaughter with Rett Syndrome I can relate to everything that has been said. I have a feeling that Esther does the same as my granddaughter when she gets excited. She appears to breathe very heavily when excited or glad to see someone. Hadley has been snorkeling and ridden roller coasters. She loves to cruise. I wouldn't trade her for the world! I pray daily for a cure for our Rett girls and boys. Very well done! Thank you for shining a light on this! My grandson (her brother) also has a rare disease called Congenital Central Hypoventilation Syndrome (Around 1200 worldwide last I heard).
How is your granddaughter doing?
I like the way her friend asked Esther to be her friend❤❤❤❤
Esther is clearly loved by all her family.
And she knows it! I love that joy she showed when they loved on her.
I have a strong connection to this video. I do child care for a girl with Retts. She is the kindest girl who loves everything and everyone.
That’s awesome. How is she doing?
Sending love from Polish family with rett girl Laura 💜
God bless these parents tremendously.
Amen!
Esther are queens, my sister calls her Ester, without H😁❤️ I just opened RUclips and found this video. May she be very happy
Welcome! I hope you stay and subscribe. :)
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
This breaks my heart man. Im praying for you little one. God surely is looking out for you .
What a darling little girl with such a loving family.
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
Her whole family is amazing and I really admire her friend Olivia. So many of us have much to learn.
Olivia is a special friend, for sure.
Hi Esther, you seem like a really sweet person❤ I hope you continue to spread happiness and sunshine forever. (My name is Esther too!)💜💞
Thank you for making these videos. It is important work.
I love you guys from SBSK, I love what you're doing.
You really show the whole family and I love that!
So sweet that Esther was griping Grandpa’s finger. And that laugh! So cool to hear her laugh while Chris is reading to her.❤😊
We all need grandparents like them!
What a pretty little child. And her siblings are so sweet to her. She's lucky to have such an awesome family. Esther was my grandmas name. I love it.
Agreed. Family is everything!
Such a beautiful, kind and smart girl, we love you Esther
Amen!
Ester is very lucky to have a family that loves and understands her.
And we’re lucky to have her!
This family and community is amazing and are lucky to have each other! Esther is so interesting, wonderful and extremely serious pretty. I wish they were my neighbors!❤
Esther! I love that book now as well. I need to buy a copy. I love being silly and laughing too! Keep being awesome.
Its amazing how important it is to laugh together!
man what a great family.
Thank You All for the interview. Very Educating and enjoyable.
What a lovely family, from the siblings to the grandparents.
Olivia is an absolute sweetheart. Chris, you are a very entertaining book reader! Why am I not surprised?
He knows how to connect with anyone it seems!
Chris you are such a blessing to this world ❤❤thanks for all you do
Thank you so much for this beautiful channel !
I’ve been following it for years!
Esther definitely is a smart girl. She is Beautiful and Smart and has an Amazing Brother and Sister. Thank you for sharing with all of us, Esther.
Agreed that she’s beautiful, inside and out!
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"
@@Heathernd What? When I talk about Beauty, it is both inside and out!!!! That is on you if you only think of the phyiscal. That is extremely very sad and on a channel like this, for you to be rude towards another person for no reason at all. Rudeness should not be allowed. Respect others not only on this channel, in everywhere you are.
@demijour1234 I’m sorry it came across as negative. I just meant to agree with you!
@@HeatherndI did then misunderstand your comment and did not see it that you were agreeing with me. So, I apologize on my end.
@@demijour1234 no problem! 💕
What a loving family, bless them!
Family makes all the difference!
SO grateful for this! I know and love Sharla (and see much of her in her daughter), but have never had the pleasure of meeting the rest of their family. The more you watch Esther the more you can see how she truly does understand and have a wonderful sense of humor. Praise God for her AND her incredible family that sees how valuable she is
A truly beautiful channel. Thanks Chris.
One of the few I’ve followed for years.
Beautiful laugh she gives at 8:52
Agreed that she’s beautiful, inside and out! Just like Esther from the Bible.
Esther 4:14 "And who knows but that you have come to your royal position for such a time as this?"