Відео

How is Rowan now? Do they now about that new idk if its a bone marrow cure?

It's so great to see the fabulous James Arthur involved with this!

Totoso!

Hello, I watched your video and I think we both are suffering from the same disease. My name is [Ahmed sher Kandhro], I am 21 years old and I have Epidermolysis Bullosa (EB). Initially, my condition was severe, but now it has improved. I am from Kotdi, Talka Rohdi, District Sukkur, Sindh, Pakistan. I would like to discuss my experiences and knowledge about EB with you. Can we talk about it? Looking forward to hearing from you.

Rowan is a sweet little angel with the toughest minded kind of parents! That's got to be such a tough experience to live but her parents I bet do such a good job! I hope the best for your family!

Yay! Can't wait for Los Angeles, 2025 🦋

#Comesayhi

Você também é Jill Vedder!! GRANDE ❤!!

Elle est mignonne

Cure EB

My baby suffering from EB from India

Thanks so much for making the world known of our hardships

No child should suffer this. There needs to be more awareness about this.

God bless him🙏✝️

Who else came from the sbsk video?

My daughter suffering from eb😢

Hi Michael, Great to meet you here in Sydney Australia, twice in the one week! 👌👌 Congratulations on the work you do for a fabulous cause. We’re all so impressed with your enthusiasm and energy mate. Stay safe and we’re all so looking forward to hopefully catching up again soon 🤞🤞Best wishes Ren & Carol ❤️❤️

Thanks for this update. So proud of all you good folks.. Lets banish this horrendous disease forever! Keep fighting the good fight!.. You all are making the difference.. We send our love, admiration and support..!!..

Que Dios bendiga a este hermoso niño, a sus papás y a su hermanito

You are such good parents ,keep the good work

Get well soon 🙏 Baby❤❤... please go to Jesus Christ he can heal this Babu Jesus Christ is living God .... Jesus heal me...god bless you 🙏 love from India 🇮🇳❤❤

Stay strong Brady

This is a great charity that helps with rare disorders.

The mom looks like pokimane

That nurse has some nerve accusing these parents of handling Rowan too roughly WTF!

I want nothing more than for there to be a cure for this devastating condition. I feel so badly for the sufferers of this cruel condition. Thank you Eddie Vedder.

This was 5 years ago. I hope they still read this and the parents probably know this but there is a cream I just read about that contains collagen 7 which is helping heal the wounds.

Dear precious boy, Brady. I pray for him and John Hudson Dilgen who also suffers from this horrible condition. I donated to the EB Research Partnership yesterday.

I really hope they can achieve their goal, it's not fair that people have to go through this...

God Bless him & thank u to the Vedders

He's the cutest little boy ever! 🥹😍😘

Chudák dítě 🖤🖤🖤🖤🖤🖤🖤

Hoping she's ok just clicked on to the channel she's beautiful god bless ❤

Hopefully she can start Vyjuvek

Letting over 12M cross our borders and paying to house, feed, clothe, medical, cars, phones, and also sending billions for other countries wars, but we can't make it easy to pay for this or any child's care and supplies. Makes me sick knowing our insurance companies would make it so hard for a family to get the help they need financially. We work hard enough, pay our taxes, and our medical insurance premiums. We can and should do much better!!!

This video is 9 years!I love Pearl Jam. However, the 5 million dollar mark has yet to be met?! They don't need 5 million to "find" a cure. The money is needed for bribing the medical profession, to hand over information, regarding a cure. Not a conspiracy theorist. However, as a Special Ed. Teacher, who has worked with human beings ages 18 month-olds, to 42 year-olds; mainly on the spectrum, im so sick of hearing: we are getting close to finding a cure! If you just donate....... "Evidence of Harm" great book. Oh, until the author was "forced" to profess, his findings were a scam. I suppose when your family's lives are being threatened, you do not have much choice.

😢❤❤❤

Awesome Stuff. Im 32 years old with EBS. This had me in tears, reminded me of my youth and the struggles i had.

Só gratidão a Deus e as pessoas que tem um coração enorme no peito,como vc e seu marido . Gratidão sempre.

That disease has to be the worst disease ever epidermis bullosa whatever the name is and to happen to children

❤

Anthroposophic Medicine

12:38 Emma's this look makes me want to call her as marshmallow lol She looks so cute

Praying for a healing for her amen try cannabis oil and THC and worm medicine for animals to kill cancer amen

God bless this initiative and Mark s family😊

She liked my comment on Twitter I talked with her at first I thought it was not having anything to do with him so I emailed it to his employee quess they thought I was crazy then I had a really bad rash at that time no feeling good it was so painful I told my son gf I wish they had a support group just to talk to others who had it I could not fight it every month .

4:56/5:14

1/10

My year is 17 and one my brother EB patient my brother 10year

I am EB patient from pakistan