it is sad... thats why im doing something about it.. im only 17 and im fundraising at my school... its devastating and something needs to be done!! :)
I can't even inagine not being able to hug my daughter. I will have your son in my blessings and I hope that someone will soon find a cure for EB no child should ever suffer like this you must realy be a strong person people like you inspire me to be a better person. I'm in the medical field and hopefully we will find a cure
Its so sad children have to suffer from so much pain. I never knew this excisted before i heard Courteney Cox talking about it, she also raises money for the EB foundation. I hope this foundation gets more treatment possibilities to help these children.
i'm very impressed by this video. It shows everything that needs to be shown. My son died the 12th of december 2006 and suffered from dystrofic EB. Thank you for letting the world know about this terrible skin disease. Nelleke ( from The Netherlands )
:'( my cousins have this, they r twins!
CandyDany101 1 year ago
I've never heard of this before. It's heartbreaking. More awareness IS needed for sure!
SpotsDontDefineMe 2 years ago
it is sad... thats why im doing something about it.. im only 17 and im fundraising at my school... its devastating and something needs to be done!! :)
aisywolfy 2 years ago
damn this sucks, and people say there's a god. if there was he wouldn't cause people to go through this BS
ertai222 2 years ago 6
poor soul. god bless him
1tomone111 3 years ago
I can't even inagine not being able to hug my daughter. I will have your son in my blessings and I hope that someone will soon find a cure for EB no child should ever suffer like this you must realy be a strong person people like you inspire me to be a better person. I'm in the medical field and hopefully we will find a cure
cocoforlove 3 years ago
Great Job Silvia!!! Give your boys a big hug from us!
Misty, Anne-Marie, heather, and Kayleigh
Dominant Dystrophic Epidermolysis Bullosa
tinykittenz 3 years ago
Jesus, this is SO sad! Poor little babies :(
thomascrown559 3 years ago
Its so sad children have to suffer from so much pain. I never knew this excisted before i heard Courteney Cox talking about it, she also raises money for the EB foundation. I hope this foundation gets more treatment possibilities to help these children.
courvid 4 years ago 2
i'm very impressed by this video. It shows everything that needs to be shown. My son died the 12th of december 2006 and suffered from dystrofic EB. Thank you for letting the world know about this terrible skin disease. Nelleke ( from The Netherlands )
nelleke1010 4 years ago
Hey Silvia, it's Lexi. I loved this video I'm gonna put some of these up on my myspace page. Did you make this one? How's Nicky?
AnimaSola3o4 5 years ago
I have EB, thanks for making this video
cutmeyemaya 5 years ago 6