ImmersiveAmbientModecolor: #b5afb2 (color 1)
Video Format : 22 (720p) openh264 ( https://github.com/cisco/openh264) mp4a.40.2 | 44100Hz
Audio Format: Opus - Normalized audio
PokeTubeEncryptID: 0848778bc653edb653340c3600fac1bafeb46de57ac4452002f0290bfa9d505415e86dbc7df79fe2cb36be8eab5e2316
Proxy : eu-proxy.poketube.fun - refresh the page to change the proxy location
Date : 1715423280899 - unknown on Apple WebKit
Mystery text : ajBINXFvQzlHWXcgaSAgbG92ICB1IGV1LXByb3h5LnBva2V0dWJlLmZ1bg==
143 : true
2,885,886 Views • Oct 3, 2022 • Click to toggle off description
Support SBSK at www.patreon.com/SBSK
SBSK's Socials:
www.instagram.com/specialbooksbyspecialkids
twitter.com/chrisulmer
www.facebook.com/specialbooksbyspecialkids
Views : 2,885,886
Genre: People & Blogs
Date of upload: Oct 3, 2022 ^^
Rating : 4.959 (459/44,448 LTDR)
RYD date created : 2024-05-11T04:02:32.44822Z
See in json
YouTube Comments - 2,826 Comments
Top Comments of this video!! :3
It's so delightful when she gasps to mean yes. It's like she's so joyfull you guessed correctly what she wanted.
5.2K |
Hearing 1 or 2 seizures on a great day. Then 150-200 on a bad day. 150-200…just unimaginable.
1.2K |
During this interview, I get the impression that Maddie does not like to have people discussing her problems. She does comprehend, is not naïve, and as in a normal person, we do not like to be discussed, as though we are not even there.
1K |
My 8yr old daughter has lissencephaly. It's so wonderful that Maddie can communicate using some words and noises.. My baby girl is basically at a 6 month old level, she used to eat only purees but unfortunately she is on a feeding tube now. It's definitely hard. As always, thank you for sharing these incredible families stories. 💕
2.9K |
it amazes me that even though her brain is formed so differently that what is "normal" she obviously understands what is said to her and can make herself understood so well. The capacity of the human spirit to thrive & survive is just amazing
3.5K |
My brother had this but was more undeveloped. He died when he was only 6 years old. He was the sweetest, cutest little angel. It's been 21 years and I still miss him desperately
714 |
It's obvious that whenever they start talking about her health or conditions that she gets upset. I think she understands a lot of what people are saying. Nobody that's sick wants their family to treat them like they're sick or they need special treatment. I think that's what she was trying to express by vocalizing after those questions. It's touching
3.4K |
I love how engaged her grandparents are, that’s really nice to see.
1K |
A close friend of my family had a son with lissencephaly. He was a lot more severely disabled than Maddie- the doctors said he would be motor-skilled and developmentally at the age of an infant for the rest of his life. He died of a seizure at 18 months. I'm glad to see that there are people living with this condition and still being able to enjoy life.
1.9K |
It is so nice to see a family that doesn't treat their disabled child like a burden. I love all of these people.
1.7K |
The way her big sister treats her and looks at her makes my heart melt into a puddle. What a beautiful family. ❤
435 |
For anyone confused as to how a lack of wrinkles could cause cognitive impairment: Most of our thought processing occurs on the surface of the brain in a thin layer of cells (your gray matter). The wrinkles give your brain much more surface area, so you have a lot more room for those thought processing cells. Microcephaly (a smaller than normal brain) just compounds the problem in Maddie's case.
Loved the video; it was nice to meet Maddie and her family. It's clear that everyone around her loves her dearly and she loves them in return.
2K |
I'm ashamed to say I've used "smooth brain" as an insult. I'm just now learning it's an actual condition and I feel horrible.
I thought it was related to slow minded animals or something like that. I know it makes no sense to post it on a YouTube comment but I'm sorry for everytime I've said it. It was me being ignorant not me being malicious.
Wishing this family all the best ❤️
1.8K |
For some reason I needed to cry. Her story grabbed my heart and SQUEEZED hard. I'll skip a family trip to McDs and give you the money instead 😁
869 |
Her little gasps and clicks are so cute, what a smart little girl ❤
741 |
The only time she seems to fuss is when the discussion is about her condition. I believe that she truly DOES understand so much more than we might expect. God bless her. (God bless you, too, Chris.)
3.8K |
Chris’ ability to connect is awe inspiring to say the least. Keep moving forward!
866 |
Her family does an awesome job with her...the attention they give to every aspect of her care and to how she relates to the world shows.
993 |
Her big sister. She is just a beautiful girl inside and out. Her parents should be so so proud. Such a sweet caring soul.
116 |
@alex.in.the.wilderness8725
1 year ago
It was great meeting you Chris! I hope we can get together again in the future. Maddie says hi!
7.3K |