Spotlight On Cornelia de Lange Syndrome

[@bettydamnboop3030]

The first time I’ve heard of this was a couple of days ago and his name is Sebastian and lord he’s a beautiful little guy. It’s because of his video that I’ve been watching videos on this topic. Thank you for educating everyone.

[@missymunro7691]

Gorgeous Sebastian is in this video..

[@lindahawthorne8337]

I too started watching the child by the name Sebastian a beautiful boy, and his family’s interaction is stunning you out there, please go to his channel, his parents are amazing, this brought me here, and so glad it did, thank you for the post

[@KrissiCreates]

Yes ! I've been following this family too. What a beautiful little boy and family! I'd never heard of CDLS either.

[@KrissiCreates]

@@missymunro7691 I thought that was him ! Such a cutie !!

[@lauraann7816]

@@missymunro7691 I definitely saw our Man Sebastián here. I am so happy it looks like he'll be home for Christmas 🎄

[@joseHernandez-xc4ix]

I really wish they had this in the 60's - 80's when my sister was still here 😢God rest her beautiful soul .

[@graciesmom62]

My first cousin, David had CDLS. He was non verbal, intellectually challenged and physically aggressive. I was one of his few playmates as we were similar in age. I’m so grateful for my cousin, who taught me about accepting differences in people. He also taught me that I didn’t have to be afraid of people who look different. He passed at age 24, after finding and ingesting my Uncle medications. I wonder if David was born now instead of 1958, would he have learned to verbalize or sign. He had no way to communicate; I can understand why he was aggressive. My Aunt was advised to put David in a state run hospital, but she refused. She took care of him at home until he passed away.

[@angelicaduncan9694]

Wow I’m so sorry I’m glad David had you to have companionship with ♥️ Rest In Peace to that beautiful soul. I wonder if he did have means to communicate if it would have made a difference. What a sad thought ♥️ but with each documented CDLS case comes new achievements and research

[@joanbaczek2575]

I think the aggression is caused by neurological issues. With cdls the cognitive ability can range from mild cognitive problems to severe cognitive disability. If the child has severe cognitive disability the era they born does not make a difference. Girls often have a milder form of cdls if they have the genetic issue on X chromosome because of the second x. If cdls is caused by problem on 5th chromosome severity is about the same with girl or boy. The girl speaking in the beginning has milder form of cdls and only reason she’s functioning as she is. No amount of therapy is going to get a more affected child to function like her

[@Death_Host]

I just found this channel and wish I found this earlier. I'm glad more people are learning of this. It brings a light to those who have CdLS like myself.

[@marciajones2993]

We’re all more than our disabilities. 💙❤️

[@stacya1094]

This made me cry, what a great foundation ! Thank you for helping children and families that need support!

[@sasivelez5473]

My son has this syndrome and I love him So much

[@pennyvoll1169]

Bless you

[@bettydamnboop3030]

Sasi he loves you too honey 🌹 he’s giving you this rose simply because he loves you. Wishing everyone health happiness .

[@hamidhussain9028]

My son is also diagnosed with CDLS, He is 3 years old, I am very upset about it. Please someone help me, what should I do now, please someone guide, now what'll be the way forward.

[@lisabeaver2919]

Or the channel ' Stephanie George ' her son Sebastián has it.

[@donnataylor980]

❤❤❤ all these children are precious. I saw cute little Sebastian. I watch his Channel on KZbin. Stephanie George it's great❤❤❤

[@cindyburbick9554]

Love watching Sebastian I saw him in the videos pretty cool

[@Dani-ICU-RN]

TY for sharing.Im 22 years ICU RN..never heard of this before..You are doing g a great job ♡

[@dianasmith725]

God bless these strong brave young people

[@abbieprice3430]

CdLS seems like a really challenging condition! But it seems like everyone diagnosed with it is unique depending on how it affects them!

[@blumberg1982]

The word is disability!! Say the word!!! It is NOT a bad word or a something to be ashamed of and our community would appreciate its use to reduce the stigma and fear around disability. Thanks.

[@doc4519]

The video is about the syndrome, not just disabilities caused by it. The word “disability” was even used in the video.

[@maritesmatining7148]

May daughter has suspected to have this kind of Syndrome also because she has the signs and symptoms.. She has NGT since birth.. Though it is hard for us to see her like we love her soo much, and we are doing our best to take care of her

[@angelicaduncan9694]

♥️♥️♥️ wishing you the best and sending love and prayers your way

[@katyyoder1481]

Any chance I can get the transcript for this video? I have a friend/family member I would like to show this to that has no access to KZbin. They have a baby with exact physical characteristics of CDLS, although no mention of it has been made and so far no diagnosis of any kind. All genetic testing has come back inconclusive... I only happened upon the syndrome through Gabe and Hannah's channel with the story on baby Avynn. It reminded me so much of my friend's baby. It's a delicate subject and difficult to know how to approach someone with a suggestion of what may be wrong with their baby. I thought maybe if I can show them something like this they might be more open to it...

[@leopaddy3535]

Such beautiful children

[@avegailVillegas-lb7uc]

My daughter had CDLS non verbal

[@oliviaadan8208]

1 in 10,000 is actually alot...so sad

[@lindamarie6574]

You are all beautiful!❤

[@lucreciacastaneda4781]

Que promedio de vida, tiene una niña, con el síndrome?

[@stronger3381]

shit's rough. wish em the best!

[@aprilturner3762]

What support is there for Canadian families ?

[@emilynsinlao9876]

My daughter has this CDLS syndrome. It is very hard because we don't have foundation intended for them in the Philippines

[@maritesmatining7148]

my daughter has suspected to heve this ki d of syndrome, she is turning 2 but looks like 4months old baby,, having NGT since birth.. it is hard for us but we will do our best to take care of her

[@marciajones2993]

@@maritesmatining7148 Am pretty sure your best is good enough. The fact you love her speaks volumes. Wishing you and your Daughter love and light. ❤️💙

[@cindywhite4485]

What is CDLS?

[@emmarose4234]

Cornelia de Lange syndrome.

[@colinpostell6347]

Cornelia de lang syndrome

[@colinpostell6347]

The people who have CDLS some can't talk some can't hear some use a walker to walk

[@colinpostell6347]

Hope that helps

[@cindywhite4485]

Yes that helped. T

[@beth6288]

Emily such a beautiful girl 😍