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?
@@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.
"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.
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
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.
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
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.
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.
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.
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.
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
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.
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. )
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.
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 👍🍯💖
