Butterfly Boy's Skin Falls Off With The Slightest Touch

This is an amazingly brave young man who even though he knows the deck is stacked against him he wants to help others.

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Comments

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Picture of GhostInShell42 achievements

+18 1. GhostInShell commented 8 years ago

Brave kid. i wish him the best. :)
Picture of Pyranthos41 achievements

+16 2. Pyranthos commented 8 years ago

When words just aren't enough... <3 :'( <3

The soul of an O:)
Picture of brandx36 achievements

+12 3. brandx commented 8 years ago

poor sod, and I am worried about depression.
Picture of tradewinds30 achievements

+11 4. tradewinds commented 8 years ago

I'm in complete awe of you Jonathan. #2 is correct, words just aren't enough. I can only hope that I can muster up a tenth of your courage, grit and pure moxie when life decides to test my mettle . Well done. The world is a better place for having you in it.
Picture of thundersnow58 achievements

+6 5. thundersnow commented 8 years ago

Very inspiring this young man, only fourteen but the wisdom of an older person. Best of wishes to him <3
Picture of huldu34 achievements

+4 6. huldu commented 8 years ago

That must be extremely painful, I can only assume he is constantly on very heavy medication.
Picture of Natan_el_Tigre52 achievements

+4 7. Natan_el_Tigre commented 8 years ago

If not already: https://www.youtube.com/watch?v=BSGxX6Eh3Zc <3
Picture of cameramaster55 achievements

+5 8. cameramaster commented 8 years ago

Oh my...no instant quips here, no 'funny' little remarks...poor lad.
Picture of MindTrick43 achievements

+9 9. MindTrick commented 8 years ago

just nothing but admiration of the spirit of this poor lil fellaw, brave man.
Picture of thundersnow58 achievements

+1 10. thundersnow commented 8 years ago

Not meaning to minimize anything from this story, the opposite is the case, but the title of the video made me skeptical and I was questioning the correctness of the title in reference to the story, so after searching a little I came upon this reputable source for those who wish to read more about this genetic skin disorder. Although massive issues with skin blistering and open wounds are part of the illness, skin falling off upon touch is not.

http://emedicine.medscape.com/article/1062939-overview
Picture of Judge-Jake53 achievements

+3 11. Judge-Jake commented 8 years ago

I have seen several patients with this illness and I made reference to it a few weeks ago, the same time that I submitted this very same video! I don't know how many thousand videos a day Snotr get sent (I would like to know) but for some reason very few of mine get air play and most are more interesting than some of the junk that does get through, but hay ho!

One of the awful things about this condition which was not mentioned in the video is that new skin which grows rather quickly actually grows through the bandages which have to be bathed and replaced extremely regularly. If any of you believe you are going to meet your maker one day this is one of the questions he/she ought to be asked WHY!
Picture of sux2bu67 achievements

+1 12. sux2bu commented 8 years ago

#10 Geez, The young man, Jonathan, has said that "They call us butterfly children because our skin is as fragile as a butterfly's wings".
I think I will go with his discription of what the doctors call him.
#11 I only submitted this one a few days ago. Maybe you messed up the link when you sent it?
Picture of huldu34 achievements

+1 13. huldu commented 8 years ago

#11 This is just one of a countless of odd diseases that exists, there are so many that only a handful of people have that are just not known. One has to realize that there is a reason that they can't spend a fortune on creating a cure for something so uncommon. It's truly a shame when it happens to someone but it's like that with everything in life. Money will always be the leading question.
Picture of Sizzlik64 achievements

+3 14. Sizzlik (admin) commented 8 years ago

#11 as #12 said..you either messed up the link..or it was a copy on another channel that got deleted. But that wasnt a double submit..sux was the only one yet..and even he double submits. Jetman emirates vid for example..he submitted it amongst others, but wasnt first.
Picture of Judge-Jake53 achievements

0 15. Judge-Jake commented 8 years ago

#14 Okay so now we have your attention:-
1) How many submits do you get in an average day
2) How many have you got accepted and waiting to show
3) As you seem to have information on who's double submitted how many of my submits have you got on file and how many are going to get viewed
:squirrel:
Picture of thundersnow58 achievements

0 16. thundersnow commented 8 years ago

#11 JJ are you an MD??? In your comment you are stating "I have seen several patients with this illness..." that would indicate that you are indeed a physician or a nurse or other medical professional...just really curious...
Picture of Judge-Jake53 achievements

0 17. Judge-Jake commented 8 years ago

#16 ;) <3 :squirrel:
Picture of thundersnow58 achievements

-1 18. thundersnow commented 8 years ago

#17 ;) <3 :squirrel:
Picture of buckleg0858 achievements

0 19. buckleg08 commented 5 years ago

just learned he died last year 2018 age 17...strong lad...<3