A Sotos kid needs to know we are just as special as anyone else. We are not defective. A parent does NOT need to be 'sorry; ' we have issues but doesn't everyone? We can have very good lives.I'm 46 and I love my life,
Hi ..My daughter was diagnosed on two days ago .. I would like to exchange a bit of experience with this syndrome .. Thank you in advance for your understanding and communication ..
Barbara Sunday there are many many “syndromes”, and I don’t understand why! Is it a defect in the DNA chain? So, whoever discovers these syndromes get it named after them? I.E.: Miller’s syndrome, Soto’s syndrome, Etc. And some seem to affect the mental actions or capacity, others seem to have mostly physical affects. Does anyone know how many “syndromes” there actually are?
"My child is normal here" Oh, your child is normal anywhere. It's the haters who are not normal. Your child is beautiful as well as ALL children. If someone is hating on you, they are ugly and not normal at all.
@@nowandaround312 God doesn't cause suffering. Why would a god who loves us pick and choose who suffers and who doesn't? LIFE and its trials and tribulations cause suffering. We aren't promised a life free of pain and suffering but we are promised an eternity with our Creator if we believe.
I am glad to see parents found the answers for their children early in life. My child was diagnosed with an "unknown" syndrome until he was 12 years old. Then they did a special chromosome test and found out he had Duplication 15q13.1.1
I loved the long-form format of the video. But I would like to hear more from the children. I would like to have then have more of a voice. But very well done.
I'm not "typical" & as an adult the advice I would give to parents of "non-typical" children is don't take it personally.even if it is a genetic condition that you have passed on don't take your feelings of inadequacy out on your child who is already dealing with issues that you really can't conceive.we don't blame you or resent you for our supposed imperfections so don't blame or resent us for our perfect imperfections
My brother will be 41 on 14th March 2019. He was diagnosed with Sotos Syndrome at the age of 12... We're from Northern Ireland. He also has features of autism. My mum & dad had very little support on Robert. He has a heart murmur, arthritis & other health issues. I feel sad now in 2019 that back in 1978 my brother has little to no support.
My son has an unknown syndrome and many of his features look like Sotos Syndrome, but he also was born with craniosynostosis and scoliosis. He also has sugnificant developemental delays. They are considered to be mild to moderate.
My ñame is Kristy Rimolo i have Soto síndrome and i live in paterson nj im 29 yearold i go to school For massage therapy. Thank to god and i live with My Mother alone i dont have friend and it is joy for me i feel alone this world for the first time im happy to Other like me
Elizabeth Rimolo As a massage therapist you will be helping so many people and help them manage their physical pain. God bless you for choosing this occupational field and helping other people.
So, it's kind of opposite of the syndrome my children have which was diagnosed when my youngest was 4. They grow slow and are behind in bone age. It is called Noonan's syndrome and can come with a host of issues. Fortunately, my children are only effected in growth patterns and size. They are 4 years behind on bone age, and grow slower than their peers. (continuing to watch
I went to high school with a guy who had sotos and he did have a generous head size but other than that he was quite lanky and walked with an interesting gait.
Hi .. My daughter was diagnosed on two days ago .. I would like to exchange a bit of experience with this syndrome .. Thank you in advance for your understanding and communication ..
Mann kann dankbar sein das ich gesunde 2 Mädchen habe es treibt mir die Tränen in den Augen wenn ich das Leid der Kinder sehe.und deren Eltern die sie mit Liebe aufziehen.und das grosse Leid ertragen.
I support all different disabilities and unknowns conditions and as person with a learning disability I 100% be hand the to all disabilities and all unknowns disabilities ❤❤❤
Is it similar to Marfan's syndrome? I think that is what it's called. It's when you're tall and stretchy, with long limbs and lawn fingers and toes. It comes with a heart defect as well.
2:56 Dude, you can say "intellectual disability". It's the correct term, as per Rosa's Law, so no one is going to verbally crucify you for using it, like they would if you used the pre-2010 term for intellectual disability.
Yeah it shouldn't be a shame having intellectual or a learning disability, doesn't make you less worthy or less of a a human. It's important to recognice too so that person can get support and gets a better chance at life. I hate when people are ashamed and trying to hide things, like it will stop existing then. Though it's disgusting when someone gets bullied for having an intellectual disability, so I do understand if kids specially don't want others to know or feel ashamed but it shouldn't be that way.
My son current age is 1 year 5 months and he diagnosed as Soto's syndrome at 8months age and getting seizures from 6th month onwards with fever. he has facial expression problem, walking problem but he is able to sit and play his self. Any medication to change the facial expression and also seizures control. FYI so far 6 times seizures came in span of 1.5 years age.
eve n Hi .. My daughter was diagnosed on two days ago .. I would like to exchange a bit of experience with this syndrome .. thank you in advance for your understanding and communication ..
I notice though that the physical characteristics of these children causes them to be a bit good looking more so than your typical kids. I'm just saying.
I have lupus and no breakthrough has been discover for decades because all funding goes to cancer. I can say the same to all kinds of other diseases and syndrome.
Im so sorry, but i laughed like crazy when that one woman just looked at the camera and took off to the left without any explanation, while her mother was talking. My god, that is hilarious. (Nothing about her or these ppl is funny, it was just the action she did. )
i have a 6 year old daughter thst has symptoms of sotos but isnt diagnosed. She has a lot of behavior issues and development issues. Who should i get a hold of to help her. Should i put her in a facility
Genetics doctor diagnosed my son at 6 months of age! They are your best bet! Mine did all the blood work that he sent out of the country and the first round came back negative so he sent it to I believe Germany and that one was positive for the rare strand of it! Most parents I take to say they just get a verbal diagnosis but I'm from new Orleans and have wonderful doctors here! If you want to ask me any questions my email is jlynne028@gmail.com feel free! My son is now 8 years old by the way and its just a lot to deal with! Hope I helped
I've definitely noticed that. It bothered me that they didn't talk more with some of the teens and adults who actually had sotos syndrome, especially when they were standing there with their parents, and it would have been easy to include them in the conversation instead of acting like they weren't there.
+Frank Duwell Yeah I would have liked to hear from the kids, too. Nobody can say how it is to grow up with Sotos unless you actually have it. I can't stand how so many people disregard anyone with some type of disability as if they can't speak for themselves when they so very often can and have so much to offer.
Dear God, Please can you heal everyone that has Sotos Syndrome from head to toe inside and outside 💖 Please can you give them Exallant Health 💖 Thank You God 👍🍯💖 Amen 👍🍯💖
All of these parents seem like really nice people and great parents
A Sotos kid needs to know we are just as special as anyone else. We are not defective. A parent does NOT need to be 'sorry; ' we have issues but doesn't everyone? We can have very good lives.I'm 46 and I love my life,
Well said! ❤
Barbara, if you don't mind my asking, how have you fared career-wise and in having a family of your own if indeed that was something you wanted?
Hi ..My daughter was diagnosed on two days ago .. I would like to exchange a bit of experience with this syndrome .. Thank you in advance for your understanding and communication ..
I’m 17
Barbara Sunday there are many many “syndromes”, and I don’t understand why! Is it a defect in the DNA chain? So, whoever discovers these syndromes get it named after them? I.E.: Miller’s syndrome, Soto’s syndrome, Etc. And some seem to affect the mental actions or capacity, others seem to have mostly physical affects. Does anyone know how many “syndromes” there actually are?
"My child is normal here" Oh, your child is normal anywhere. It's the haters who are not normal. Your child is beautiful as well as ALL children. If someone is hating on you, they are ugly and not normal at all.
What a WONDERFULLY thorough program! More than once, I realized I'd been smiling!
This homie doesn't blink ... Like bro you could win all the staring contests...
The Crippling Depression it's abit creepy how he just stares all wide eyed 😂😂😂
The Crippling Depression lmao right i never seen noone do that before. i bet he wins All the staring contests. 😂😂😂😂😂😂
😂 😂
Reminds me of Marshall Applewhite
LMAO!
every child that has a disability such as these kids are a gift from God and are very awesome people.
You know what's a "gift from a God"? Not making innocent children suffer unnecessarily.
Thank you.
@@nowandaround312 God doesn't cause suffering. Why would a god who loves us pick and choose who suffers and who doesn't? LIFE and its trials and tribulations cause suffering. We aren't promised a life free of pain and suffering but we are promised an eternity with our Creator if we believe.
@@pksmith1275 OUR ANCESTORS CHOSE THE KNOWLEDGE OF GOOD "AND" THE KNOWLEDGE OF EVIL, SO BY GOLLY, WE'VE GOT IT.
Holly looks exactly like her mom
A friend of mine has this syndrome, so I thought I would watch this video to get some information.
Dr Brad Shaefer doesn't blink! Almost impossible to talk as long as he does but never once blinks. Most peculiar.
Ahh. I knew something was up but I couldn't pinpoint it. 👀 His eyes must feel so dry by the end of the day.
How does he do that? I blinked about a million times just while he was talking!
bronzerat012 I noticed this too it was freaking me out 😅
Michelle D hes not real lmao more alien like than human
Nisha Arias Yeah.. I do find his non blinking really REALLY REALLY weird!!!!!
I am glad to see parents found the answers for their children early in life. My child was diagnosed with an "unknown" syndrome until he was 12 years old. Then they did a special chromosome test and found out he had Duplication 15q13.1.1
I loved the long-form format of the video. But I would like to hear more from the children. I would like to have then have more of a voice. But very well done.
Man I’m so Lucky I have Sotos syndrome and Ehlers-Danlos i’m surprised I can even walk and talk. Plus dyslexia
So adorable, and they seem so sweet.
This was very interesting. I do not have Sotos, but I do have Turner Syndrome. Genes can be complicated.
One of my best friends has Turner syndrome too. I've learned a lot from her.
I'm not "typical" & as an adult the advice I would give to parents of "non-typical" children is don't take it personally.even if it is a genetic condition that you have passed on don't take your feelings of inadequacy out on your child who is already dealing with issues that you really can't conceive.we don't blame you or resent you for our supposed imperfections so don't blame or resent us for our perfect imperfections
My brother will be 41 on 14th March 2019. He was diagnosed with Sotos Syndrome at the age of 12... We're from Northern Ireland. He also has features of autism. My mum & dad had very little support on Robert. He has a heart murmur, arthritis & other health issues. I feel sad now in 2019 that back in 1978 my brother has little to no support.
Hi Andrea. Does your brother live with your parents?
Autistic children have no special physical features.
Me and my brother has Soto syndrome since we were born 😁
The little boy is charming and beautiful. Sweet sweet smile. All the children are lovely.
My son has an unknown syndrome and many of his features look like Sotos Syndrome, but he also was born with craniosynostosis and scoliosis. He also has sugnificant developemental delays. They are considered to be mild to moderate.
9:47😂💀She was the hell outta there!!😂
I have a best friend that have sotos syndrome and i love her she is like my sister
Cool
My ñame is Kristy Rimolo i have Soto síndrome and i live in paterson nj im 29 yearold i go to school For massage therapy. Thank to god and i live with My Mother alone i dont have friend and it is joy for me i feel alone this world for the first time im happy to Other like me
Elizabeth Rimolo As a massage therapist you will be helping so many people and help them manage their physical pain. God bless you for choosing this occupational field and helping other people.
Elizabeth Rimolo. I like you ! 🙋🌹✌
Elizabeth Rimolo ha I was born in Paterson, NJ
Elizabeth I hope you are doing well with your massage therapy.
Dr Brad does not blink!
Aww ! Leave the poor guy alone he's not bothering anyone Besides he might even b at an advantage if he don't blink much!
So, it's kind of opposite of the syndrome my children have which was diagnosed when my youngest was 4. They grow slow and are behind in bone age. It is called Noonan's syndrome and can come with a host of issues. Fortunately, my children are only effected in growth patterns and size. They are 4 years behind on bone age, and grow slower than their peers. (continuing to watch
I went to high school with a guy who had sotos and he did have a generous head size but other than that he was quite lanky and walked with an interesting gait.
I also have sotos syndrome
This doctor does not blink
very good and informative. Thanks
The mom says "she doesn't have behavioral problems at all" as the girl exits stage left. What a strange disease
ANTIQUEFOTOS she was kidding 😂
The daughter was embarrassed to be talked about like a specimen in front of others and on camera.
Yeah it was a cute joke from both mom and Holly lol
My daughter is 8 and has been diagnosed Sotos Syndrome.
Hi .. My daughter was diagnosed on two days ago .. I would like to exchange a bit of experience with this syndrome .. Thank you in advance for your understanding and communication ..
Mann kann dankbar sein das ich gesunde 2 Mädchen habe es treibt mir die Tränen in den Augen wenn ich das Leid der Kinder sehe.und deren Eltern die sie mit Liebe aufziehen.und das grosse Leid ertragen.
To me, they look just fine.
Yes! These are some of the cutest and beautiful kids I’ve ever seen
,
My friend has a son with Sotos and he is adorable and smart
Very informative. Thanks for sharing.
does that guy ever blink?
+sammy11232003 Once!
He did blink, just not much.
SAMMY Maybe he needs to see another doctor for this condition !
I support all different disabilities and unknowns conditions and as person with a learning disability I 100% be hand the to all disabilities and all unknowns disabilities ❤❤❤
0:51 This guy is talking to someone who's dressed like a clown or something... or he's being held without his consent...
hey do you know where i can find this video with sub in spanish? thank you! ^_^
9:44 xD
Is it similar to Marfan's syndrome? I think that is what it's called. It's when you're tall and stretchy, with long limbs and lawn fingers and toes. It comes with a heart defect as well.
Does the grass grows on their fingers n toes!? And who mows the grass on their lawn ? BTW maybe get spell-check for comments! Lol
9:44🤣🤣 Holly and her mom are awesome! Not at all mom!
I know a Sotos kid and hes adorable
2:56 Dude, you can say "intellectual disability". It's the correct term, as per Rosa's Law, so no one is going to verbally crucify you for using it, like they would if you used the pre-2010 term for intellectual disability.
Yeah it shouldn't be a shame having intellectual or a learning disability, doesn't make you less worthy or less of a a human. It's important to recognice too so that person can get support and gets a better chance at life. I hate when people are ashamed and trying to hide things, like it will stop existing then. Though it's disgusting when someone gets bullied for having an intellectual disability, so I do understand if kids specially don't want others to know or feel ashamed but it shouldn't be that way.
He did blink once
I saw that too. But it was like he closed his eyes, kinda slow for a blink.
I have the Sotos syndrome and light form of autism😣
Oops that was Duplication 15q13.1. After that the family was tested and we were surprised that his oldest brother had it too.
My son current age is 1 year 5 months and he diagnosed as Soto's syndrome at 8months age and getting seizures from 6th month onwards with fever. he has facial expression problem, walking problem but he is able to sit and play his self. Any medication to change the facial expression and also seizures control. FYI so far 6 times seizures came in span of 1.5 years age.
A i agree they are beautiful
my daughter is 20 and has sotos sydrome
eve n Hi .. My daughter was diagnosed on two days ago .. I would like to exchange a bit of experience with this syndrome .. thank you in advance for your understanding and communication ..
i was diagnosed with Sotossyndrome at a age of 10 months (a lot of my friends only at a age of 3 or older)
I think that some of the children do resemble their parents and siblings
Well of course they do
I notice though that the physical characteristics of these children causes them to be a bit good looking more so than your typical kids. I'm just saying.
God does not make mistakes, they look like Angels! 9:45 ....Classic! lol.
Do you know what the angels look like? Ezekiel 1 : 5 -13.
At 1:13 still no blinking!! Wow 😳😳😲😲😲😲
Stacey Smith look at 4:00 he does
WHAT SYNDROME DOES THE DOCTOR HAVE...... HE DOESN'T BLINK.
He looks like he’s seen things
The doctor doesn’t blink - how weird!
Oh my gosh, they have the cutest pixie noses EVER! If you're going to have a syndrome, at least have an adorable one. ;-)
I have lupus and no breakthrough has been discover for decades because all funding goes to cancer. I can say the same to all kinds of other diseases and syndrome.
Does he ever blink
What's the chromosome pattern?
agradecería mucho a quien lo pueda subtitular al español
Im so sorry, but i laughed like crazy when that one woman just looked at the camera and took off to the left without any explanation, while her mother was talking. My god, that is hilarious. (Nothing about her or these ppl is funny, it was just the action she did. )
Don't apologize: It was hilarious. Personally, given the expressions she made beforehand, I think she did it on purpose for comic effect.
Andrea Jimenez i agree lol .
Christine R
YES! cuz mom gave a lil chuckle thing too
Funny mom took it all in stride! What a cute girl!
Me to 😂she's the cutest
How about if you interview say five of these kids and indicate where each one is on the spectrum. We could learn so much ...
I wonder if wrestler,Andre the giant had this condition?
i have a 6 year old daughter thst has symptoms of sotos but isnt diagnosed. She has a lot of behavior issues and development issues. Who should i get a hold of to help her. Should i put her in a facility
Genetics doctor diagnosed my son at 6 months of age! They are your best bet! Mine did all the blood work that he sent out of the country and the first round came back negative so he sent it to I believe Germany and that one was positive for the rare strand of it! Most parents I take to say they just get a verbal diagnosis but I'm from new Orleans and have wonderful doctors here! If you want to ask me any questions my email is jlynne028@gmail.com feel free! My son is now 8 years old by the way and its just a lot to deal with! Hope I helped
+jlynne0281 hi how can you talk to u
She doesn't have it ;). She would have been diagnosed by now
can they talk like other kids
I've definitely noticed that. It bothered me that they didn't talk more with some of the teens and adults who actually had sotos syndrome, especially when they were standing there with their parents, and it would have been easy to include them in the conversation instead of acting like they weren't there.
+Frank Duwell Yeah I would have liked to hear from the kids, too. Nobody can say how it is to grow up with Sotos unless you actually have it. I can't stand how so many people disregard anyone with some type of disability as if they can't speak for themselves when they so very often can and have so much to offer.
Melissa Drinkwater they do short interview clips a little halfway through and yeah seems like.
Why the heck ware there all these “syndromes”!?
So they can't blink?
ATgrubb80
damn piga 🐽
All the mothers show the sympthoms too
s
they all look the same
Dear God,
Please can you heal everyone that has Sotos Syndrome from head to toe inside and outside 💖
Please can you give them Exallant Health 💖
Thank You God 👍🍯💖
Amen 👍🍯💖
Iam sorry I just don't see any difference in these children as special needs. They all are so very cute