A Kid with Butterfly Skin (Epidermolysis Bullosa Simplex)

I look forward to the next update with noah, he seems like a chill guy

Interesting, my brother has something similar but he hasn’t been diagnosed with anything, he has big patches of pinkish/redish skin

John Hudson the living Legend!!!
Praying for his treatment to go well
Noah is such a sweet kid

The skin Im in is also a part of my life! i also have EB..... Im almost 50 and have been navigating EB and tryin to develop a lifestyle as close to normal as possible. i salute Noah and his support system he has because it really takes patients and understanding with EB as it invades everyone's lives who care for him! Soooooo many times Ive experienced pain and tried to articulate that pain where as the person who Im talkin to simply didn't have the understanding to help in times a need! i totally relate to the parents and siblings of Noah! ........ this video def hits in my heart....... Noah jus know we are here!...your community is here.....To Noahs parents and family..... reach to me as Im reaching to you in order to grab EB and share to the world of the greatest unknown desease to mankind!.... i share in your pain as well as I've strived thru it to survive!.......... Noah, i salute you for your courage and youthful wisdom you've blessed us with. its only up from here.

What his mom said about not minimising the pain really hit me. I think that’s so true for ANY diagnosis, may it be physical or mental. Such simple but strong words.

That's not Noah, that's IShowSpeed!

fun fact: Eddie Vedder of pearl jam helped found the eb research program its called cause the wave

Raising 400k is an amazing accomplishment! Wow, this community is so impactful!

I have the same couch as them

To Mr Chris Ulmer - My Name is Megan Christian - I am 039 yr old almost 040 yr old woman with autism ( I also have OCD and learning Disabilities) and would love to be interviewed by you and SBSK someday - so please interview me next

Noah is such a handsome young man! He has such a loving family too. His uncle is such a good role model.

Does anyone know if this channel donates any of its profits to the participants

Thank you for your life!

This is amazing

Hey, did you ever talked or know someone with Savant syndrome?

Didn’t John Hudson pass?

I understand eye contact is important, but your eye contact is unrelenting. Like, you legitimately do not move your eyes away for even a quick glance, that would be so off putting to me if I was the one having the chat with you.

I would like to be his friend he seems sweet

looks like juice wrld

He must have a very mild version.
I remember the white boy who had it, who was bandaged from head to toe .

Edit: the mom confirmed what I thought .
Either way, wish him the best .

Uncle said " I don't mind helping my nephew if he needs help getting around "
❤ Bless his Pure HEART ❤️

did bro turn black

I have the same condition as him! This made my heart warm watching this video due to the fact i dont really ever see people with the same condition! Love you guys and everything you do! ♥️

👏👏👏👏👏

EE this makes me so happy😭

Got chills hearing your announcement! Such wonderful news! So excited to contribute this year ❤

Noah, you’re such a cool dude. Thanks for sharing about your life, family, and experience with EB. Hoping more research will be done to improve your life even further in the future. Lots of love to you and your awesome family ❤

"Be fun" is freaking huge advice that will get you far all throughout life. Noah is a wise kid!

Eu faço parte do grupo de pessoas apoiadores do tratamento da Epidermólise Bolhosa, EB, aqui no Brasil. Às "crianças borboletas" precisam de ajuda.

Jesus loves you, and repent, turn away from evil ways❤

he’s cute tho-

I have en too. I have never seen a african american with eb. Its very discrimitory lol. My feet also hurt a lot ehen i walk too so when i was younger i used to have s wagon for school trip's etc. but i wanted to let him know that most mild cases like me and him get better over time.

I’m just a chill guy

Idk why but the way he answered "i like balloons" to the question, "what do you want people to know about you" was just so sweet. Shows the innocent nature of children. Even though he has these struggles, his 1st thought is to tell the world he likes balloons. Thats what he finds significant. So lovely. Amazing little boy

🎈🎈🎈🎈🎈🎈🎈

So silly, love the mind on this little man. "Why do cats always sit like that?" 😂and go Chris for validating his question! Never a dumb question, stay curious! 🎈🎈🎈

He looks like ishowspeed

He’s adorable.

I’m in high school and just learned about this disease in class a few months ago!
Really hope someone finds a cute or a better treatment soon 🙏

I want to know how the cat was sitting 😂😂😂

KSI IShowSpeed

In like 3rd year of high school (about 12yro) i convinced my enterprise class to donate our profits from selling crafts to cureEB. When i think about it, thats probably one of the coolest things i did as a kid. So it is fantastically brilliant to hear about a treatment. I know treatment is not the same as cure (believe me, i do) but this is the best news to hear.

Noah looks normal treat him like normal hes kind a nice handsome kid
Amen

Great that he's got a nice uncle to help him out!

“When he can’t walk, I’ll carry him” 🥹🥹🥹