@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.
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.
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
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.
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
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 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.
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. 💜💜💜💜💜
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 💜
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.
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.
@@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.
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 ❤
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 ❤
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.
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!! 💜💜💜
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!
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 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!
My Daughter was just Diagnosed with Rett syndrome 2 weeks ago now and this video really has helped me so much! She is just 1 1/2 right now and shes just so full of love and is the sweetest kid I ever came in contact with. She tells me she loves me just by touching my cheek and smiling at me.
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!
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'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. 💜 😊
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?"
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?"
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 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 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!
My best friend has Rett syndrome, she is so sweet, when I first met her, people were all over her, (we were in prep, so we all wanted to be with the kid who gets a lot of attention) over the years, the excitement faded and she had no friends, when I see her, seeing her smile makes my day. We go sit in the trampoline and bounce, and she laughs, people with Rett syndrome are just the same on the inside, you need to show them love ❤❤❤❤❤
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.
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!
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.
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?"
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 💜💜💜
My cousin had Rett syndrome & she passed away at 23, 3 years ago. I will always remember her as the light of my life. We grew up together like sisters.
What a beautiful girl. I'm born disabled and so on (I'm not here to discuss myself), but you can literally see the angel trapped. Like a a car that won't start, "Just work, dammit!" She's so precious and I understand.
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.
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!!!
one thing im so glad about being in the more modern time is that the communication for the disabled, especially ones that struggle with verbal speak, has gotten so much better. There's too much emphasis on verbal speak, but it's not the most important way to communicate as a person. Physical, whether that's sign language or simple movements that people can read, or if it's with specialized equipment, is just as important. I'm glad we're in an age where it's a lot easier for the disabled to communicate in their own ways that suit them. I know as a kid I would become super frustrated when I was upset and 'couldnt speak' and no one understood what i was trying to 'say' through my movements. It's just nice to see the advancement and real effort
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 beautiful. I can't think at something more frustrating than having a fully functioning mind, aware of what's going on and a body that just doesn't respond. It's also difficult to imagine a family more just, helpful, and loving than the one she has. That's the most important thing. ❤
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?"
It truly wonderful to see how connected and supportive you are as a family unit. I loved hearing that she is in school. You're all doing a great job and just sending you all positivity love and strength! You're raising wonderful little people, to see how much her siblings love her is so precious! You are all doing so wonderful!!! 🩷💕
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. ❤
Thanks for posting! A close friend of mine is disabled and I believe she has Rett syndrome (idk because the school doesn't let me know but I did my research, read some books and talked with her teachers) it's so important for me to hear other people's experiences :)
Oh my goodness my daughter has Rett syndrome, my daughter was diagnosed when there wasn’t bearly anything known about it, exactly the same with my daughter she’s now 30 years old this year, she’s never been able to do anything for herself, my daughter can’t speak or use buttons or use the eye choice buttons. My daughter has the most beautiful smile she’s so beautiful. I have 4 children and daughter with Retts syndrome is the oldest, her name is Brookie. She thinks it’s funny when we hurt ourselves and shout ouch, she loves celine Deon and being outside, she loves being told she’s beautiful. It’s a hard life but the most rewarding and I can’t imagine ever being without her. THANK YOU FOR SHOWING THE WORLD ABOUT OUR BEAUTIFUL GIRLS
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 👍
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.
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.❤❤❤❤
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 a beautiful little girl. She is so lovely and kind and gentle. I love that her siblings just love her so much. And her parents love for her... It's honestly joyful to see. Tears of joy. ❤❤❤
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?"
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).
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.
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?"
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 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!❤
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.
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.
I really love and like that if the "special" kid has a younger (or even older, doesn't really differ much) sibling, this sibling will grow up as a nice person and with empathy (maybe), and will never hate people with disabilities but rather help them (if they need to). ❤ I am that "special" sibling to my sister. My sis is amazing! 💖💖
This is such a great and beautifully compassionate family and y. tube channel. It is the compassion of divine source moving through each one behind and on camera. ❤❤❤❤❤❤❤
How remarkable to take such a hard situation and turn it into joy. No doubt there are untold hardships, but their faith is clear and those siblings are blessed. Queen Esther, just like in the Bible, is a light in the darkness! The love between the parents, too, is obvious and a testament to this strong family. The way they look at each other and draw from each other just by their looks. The dad has a strength that doesn't need many words and the mom clearly draws from that. How lovely. Thanks for sharing your love! I wonder...the parents and siblings have dark hair, yet God seems to have blessed "the quiet queen" with golden curls. Must be God's way of showing how special she is.
What a beautiful family. These parents should be so proud of how they have raised these kind, intelligent, empathetic children. Esther has such a light to her. What a magical soul and blessing to this earth. Really lovely and touching interview ❤
Agreed that she has a light, 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?"
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?"
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.
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.
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
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.
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.
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 ❤
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?
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 ❤
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.
She is okay.
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!! 💜💜💜
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!
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?"
Yes
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 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!
My Daughter was just Diagnosed with Rett syndrome 2 weeks ago now and this video really has helped me so much! She is just 1 1/2 right now and shes just so full of love and is the sweetest kid I ever came in contact with. She tells me she loves me just by touching my cheek and smiling at me.
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!
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?"
She looks like a supermodel! She is a GORGEOUS little girl!
She absolutely does ❤
Esther has such a loving family and she is very loved
It makes all the difference!
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!
esther’s community and family is wonderful. olivia seems like a good friend :)
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?"
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?"
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 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.
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!
SBSK, thank you for what you’re doing
Amen!
She is stunningly beautiful
This sweety is imprisoned in her body. You feel that she is trying and fighting to control her body, but she is not capable. A sweetheart ❤ 😢
My best friend has Rett syndrome, she is so sweet, when I first met her, people were all over her, (we were in prep, so we all wanted to be with the kid who gets a lot of attention) over the years, the excitement faded and she had no friends, when I see her, seeing her smile makes my day. We go sit in the trampoline and bounce, and she laughs, people with Rett syndrome are just the same on the inside, you need to show them love ❤❤❤❤❤
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.
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!
My heart goes out to these parents. May God make things easy for them.
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 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.
Sending love from Polish family with rett girl Laura 💜
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?"
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.
I love this! My daughter has Rett Syndrome and she loves books and music soo much!
My cousin had Rett syndrome & she passed away at 23, 3 years ago. I will always remember her as the light of my life. We grew up together like sisters.
What a wonderful support system she has! ❤
What a beautiful girl. I'm born disabled and so on (I'm not here to discuss myself), but you can literally see the angel trapped. Like a a car that won't start, "Just work, dammit!" She's so precious and I understand.
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
❤Love never fails…thank you Jesus and thank you Chris for sharing these beautiful families x❤
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!!!
one thing im so glad about being in the more modern time is that the communication for the disabled, especially ones that struggle with verbal speak, has gotten so much better. There's too much emphasis on verbal speak, but it's not the most important way to communicate as a person.
Physical, whether that's sign language or simple movements that people can read, or if it's with specialized equipment, is just as important. I'm glad we're in an age where it's a lot easier for the disabled to communicate in their own ways that suit them.
I know as a kid I would become super frustrated when I was upset and 'couldnt speak' and no one understood what i was trying to 'say' through my movements.
It's just nice to see the advancement and real effort
Watching the siblings love on her is precious. The sweetheart neighbor is a a wonderful friend.
A child’s love is so beautiful.
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?"
Esther is beautiful. I can't think at something more frustrating than having a fully functioning mind, aware of what's going on and a body that just doesn't respond. It's also difficult to imagine a family more just, helpful, and loving than the one she has. That's the most important thing. ❤
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. ♥️
This is one of the best channels on TH-cam. So important.
Agreed. I’ve been following it for years.
The way he was kind of sitting away from you but the more you read through the book the more she leaned onto you.
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?"
It truly wonderful to see how connected and supportive you are as a family unit.
I loved hearing that she is in school.
You're all doing a great job and just sending you all positivity love and strength! You're raising wonderful little people, to see how much her siblings love her is so precious!
You are all doing so wonderful!!!
🩷💕
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. ❤
Love Esther’s reaction to Grandma and Grandpa ❤
Yes, she really lights up!
So much love , beautiful ❤
The girl give her strength, courage and to follow her heart amen.
Amen!
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!
Chris you are such a blessing to this world ❤❤thanks for all you do
Thanks for posting! A close friend of mine is disabled and I believe she has Rett syndrome (idk because the school doesn't let me know but I did my research, read some books and talked with her teachers) it's so important for me to hear other people's experiences :)
Her mum is just the sweetest
Such a cutie!! Thanks for sharing with us Esther and fam! 💐💖💐
Ester is a lovely little girl who comes from an amazingly loving family.
Oh my goodness my daughter has Rett syndrome, my daughter was diagnosed when there wasn’t bearly anything known about it, exactly the same with my daughter she’s now 30 years old this year, she’s never been able to do anything for herself, my daughter can’t speak or use buttons or use the eye choice buttons. My daughter has the most beautiful smile she’s so beautiful. I have 4 children and daughter with Retts syndrome is the oldest, her name is Brookie. She thinks it’s funny when we hurt ourselves and shout ouch, she loves celine Deon and being outside, she loves being told she’s beautiful. It’s a hard life but the most rewarding and I can’t imagine ever being without her. THANK YOU FOR SHOWING THE WORLD ABOUT OUR BEAUTIFUL GIRLS
Sounds like a spunky, smart, loving girl!
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.
Her little laugh when he’s reading the book is priceless ❤what an amazing family.
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.
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.
So good to see her again and all the family flourishing together,
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?"
What a beautiful little girl. She is so lovely and kind and gentle. I love that her siblings just love her so much. And her parents love for her... It's honestly joyful to see. Tears of joy. ❤❤❤
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?"
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 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?
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.
Esther are queens, my sister calls her Ester, without H😁❤️ I just opened TH-cam 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?"
What a beautiful family! God bless precious Esther and her precious siblings and her whole family. ❤️
Family makes all the difference.
Beautiful little girl.
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?"
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!❤
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.
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?
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!
I'm glad, the girl has nice parents, sibligs and friends. She would be lost without the love around her. But she is needed from them too.
I really love and like that if the "special" kid has a younger (or even older, doesn't really differ much) sibling, this sibling will grow up as a nice person and with empathy (maybe), and will never hate people with disabilities but rather help them (if they need to). ❤
I am that "special" sibling to my sister. My sis is amazing! 💖💖
Yes they already have such tender hearts.
absolutely and objectively not always the case
Esther is clearly loved by all her family.
And she knows it! I love that joy she showed when they loved on her.
Olivia, her friend, what an amazing caring girl! Wow. Children are incredible sometimes!
This breaks my heart man. Im praying for you little one. God surely is looking out for you .
You really have an amazing channel. This brings out and shows the positive side that social media can have. ✌️
It’s one of the few I’ve followed for years.
This is such a great and beautifully compassionate family and y. tube channel. It is the compassion of divine source moving through each one behind and on camera. ❤❤❤❤❤❤❤
Agreed! Only God can gift a family with this kind of love.
How remarkable to take such a hard situation and turn it into joy. No doubt there are untold hardships, but their faith is clear and those siblings are blessed. Queen Esther, just like in the Bible, is a light in the darkness!
The love between the parents, too, is obvious and a testament to this strong family. The way they look at each other and draw from each other just by their looks. The dad has a strength that doesn't need many words and the mom clearly draws from that. How lovely. Thanks for sharing your love!
I wonder...the parents and siblings have dark hair, yet God seems to have blessed "the quiet queen" with golden curls. Must be God's way of showing how special she is.
When her dad is talking, i instantly know where the "smartness" came from
She is so precious, as are her siblings & parents
What a beautiful family. These parents should be so proud of how they have raised these kind, intelligent, empathetic children. Esther has such a light to her. What a magical soul and blessing to this earth. Really lovely and touching interview ❤
Agreed that she has a light, 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.
my daughter with Rett Syndrome is doing so much better from Topamax with the breathing issue! she loves books too
Good to know!
The whole family is loving and adorable!❤
It makes all the difference.
What a beautiful family.. Esther is so pretty. Thank you for sharing this. It is so informative.
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?"
Awe, she really lit up with her grandparents. How sweet.
These kids are adorable
They really are.