Garrett: The Boy Beneath The Bandages. WINNER of the Rare Disease Day 2010 Video Contest.

Epidermolysis Bullosa, or EB, is a rare genetic skin disorder the the majority of people have never heard of, yet it affects 100,000 children across the United States. Children born with this disease lack the ability to produce the collagen-7 protein that acts as a glue to bind the inner and out layers of skin together.

This video is about Garrett and the disease he was born with, Epidermolysis Bullosa or, EB. This video is very unique compared to images you might normally see regarding EB, in that it gives the public an intimate, true to life view of what living day-to-day is like with a rare debilitating skin disease.

Part 2 of this video can be viewed here: http://www.youtube.com/watch?v=0TISlcYhsU8

Category:

News & Politics

Tags:

• Rare Disease Day 2010
• Epidermolysis Bullosa

[617kittenchicha]

what an amazing lil guy and his whole family as well being so supportive and so close it's so sweet and he still puts a smile on even through this awful thing, my heart goes out to u and anyone else who is suffering with anything

[56785439]

he is amazing im a affected my a rare genetic disorder called prader-willi syndrome it affects 1 in 15,000 live births each year

[SuperMissblueeyes]

What an amazing family you are. Garrett seems such a lovely boy & is obviously very strong & patient. And you are such a wonderful mother to him. It must be so hard for you all, but you're amazing. I wish you the best in life & I hope scientists find a cure for this soon so Garrett & others with such awful, painful skin disorders can be free of this pain & have a pain-free life. My best wishes to you all.

[themainman2008]

How does it pass one child and hit the next.

[pimpjuice61452]

I have this diaseees ... but I dont have it very bad but in the summer I start to get blisters and im bandaged head to toe

[glitterlover429]

my teachers daughter has this and he tells the class about it all the time.. im pretty sure though i am the only one who looked it up.. and this is sad...

[RareDiseaseContest]

Thanks for the video. We too are trying to aid researchers in their discovery of cures for these children, and we are doing this by supplying them with the research software they need. Together with the CRDN we are giving away a rare disease research system worth $50,000 to the winner of a video submission contest and the rare disease organization of their choice. To learn more about this contest visit Remedymd.com/RareDiseaseContes­t. Good luck!

[greenvwgirl70]

Hi Lorraine, My name is Celena. I spoke with you over the phone and met you at the Eb clinic in Dec. 2008. I believe you guys were being filmed during that visit. My daughter Emberly passed in Feb 2009. She had JEB-Herlitz. I just want to say that you and Garrett are amazing people. I wish more people could really understand what you guys go through. Keep your strength up. I have lots of love for you both.

[tituswithlove]

there is really a cure, i watched this eb dsea in Discovery channel, a kind of bone marrow transfer from someone that is compatible to him...this is truly a heart quenching video...

[Solofox]

Garrett, God bless you and your mother...