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The Boy Whose Skin Fell Off

Did any of you watch it? Its repeating tonight at 10 EST on TLC.
How did such a crude and evil disease like that come about? cry

Originally posted by Morbid4Daniel
The Boy Whose Skin Fell Off

Did any of you watch it? Its repeating tonight at 10 EST on TLC.
How did such a crude and evil disease like that come about? cry
cry

Awww

I feel so sorry for him

crybaby thats sad. Even sadder then tigger dieing.

I know, sblomie
You should feel pity, not be thinking about barfing

cry

wow that sucks

Aww, did any of you see this show? Its so sad..you should've seen HIS BACK! It was so beyond...sad. When his mother had to change his bandages...omg..he has no hands, little tiny legs, his flesh looks..exactly like what the title of this show was.

I'm crying

I'm just so sad why did this terible thing happend to him why, why, why

How come your name didn't change yet rodeoangel?

He was born with it. I wonder these things as well...how it came about...

Well he was actually SO funny and enthusiastic up until his death, he didnt even WORRY about death at all..that's the good thing.

Originally posted by Morbid4Daniel
Aww, did any of you see this show? Its so sad..you should've seen HIS BACK! It was so beyond...sad. When his mother had to change his bandages...omg..he has no hands, little tiny legs, his flesh looks..exactly like what the title of this show was.
I know

what channel and what time?

TLC <Ch 32 for me>, last night was the first time it aired. Tonight it will be on TLC at 10 pm EST, and replaying at 12 AM.

Originally posted by Morbid4Daniel
He was born with it. I wonder these things as well...how it came about...

Well he was actually SO funny and enthusiastic up until his death, he didnt even WORRY about death at all..that's the good thing.
I realy hate life now and days

To many people are dieing from all these diseses

Yeah. I have two family members with, or that had cancer. Actually one still has the potential for it to re-occur. He has rhabdomyosarcoma, Ive made threads on it if you'd like to look. He's 17, he's made front page of the paper and everything. He's not down on life or anything.

cool.. about ot being down that is

Why did marry eat that apple? Why did she obey god?

Oh darn i realy love that kid

Originally posted by Freaky Zeeky
How come your name didn't change yet rodeoangel?

no, Idea.

That's just sick..cry

Atleast they made his life so meaningful and worth it

I'm ganna pray for him to rest in peace

Yeah. Im pretty sure he didnt like people pitying him though..but it's hard not too.

I think he dident worry about dieing because he knew he was going to heaven i guess

Originally posted by Morbid4Daniel
The Boy Whose Skin Fell Off

Did any of you watch it? Its repeating tonight at 10 EST on TLC.
How did such a crude and evil disease like that come about? cry

yeh I saw this when it was first shown over here last year.

It was sad but I thought it was a brilliant program.
showing how this guy even though he has this terrible illness still lived an amazing life and struggled against everything that was thrown at him to help others.
and how he kept such an uplifting spirit when alot of other people would have given up.
he was really inspiring and brave.

Originally posted by Morbid4Daniel
Yeah. Im pretty sure he didnt like people pitying him though..but it's hard not too.
why didn't he want people pitying him! cry

Very, PH. I loved his enthusiasm, I found myself laughing quite a bunch last night when I came home from the movies, sat down and watched the rest of it. It was really uplifting.

Because he just didnt, its hard to explain, rodeo. He had his spirits high and he just wanted people to be happy for him.

Wow this is the best time to put on some sad music

I havn't even read the article thing or whatever it is yet! the names sad enough! Is there like gross pictues and sad stuff in it? cry

Originally posted by rodeoangel
I havn't even read the article thing or whatever it is yet! the names sad enough! Is there like gross pictues and sad stuff in it? cry
On the video

I can't do it. Tell me about it. What happened to the kid! cry

He lived for 36 years and all that 36 years was painful years

his skin feel off with just one touch anywere around his body when he scracthed hes skin was falling off and when he was waering tight clothings, wow amazing how he can handle all that pain

Thirty-six-year-old Jonny Kennedy was born with a terrible genetic condition called dystrophic epidermolysis bullosa, which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonizing sores and leading to his final fight against terminal skin cancer.

In his last months, Jonny decided to work with a filmmaker to document his life and death. The result is a film that tells the uplifting, confounding and provocatively humorous story of an amazing man on a mission to make his final days on earth memorable. Even at his very final moments, Jonny was still working desperately to raise awareness of this debilitating condition and to help find a cure. Jonny was also frank about his feelings on his upcoming death and practical about the arrangements. We join him as he chooses his coffin and has the symbols of his life etched into it. Not shying away from the grim reality of a terminal condition, this film is a celebration of a life lived to the very brim.

crybaby

Originally posted by rodeoangel
I havn't even read the article thing or whatever it is yet! the names sad enough! Is there like gross pictues and sad stuff in it? cry

No, not really. The documentary was a little graphic though.

crybaby *deep breath* crybaby

Originally posted by SuperBuddy
Atleast they made his life so meaningful and worth it

I'm ganna pray for him to rest in peace You ever think maybe he doesn't want you to?

Of course he would, why wouldnt he Derfman? He just doesnt want you to pity him and feel sorry for him because he thinks you should know he's off to a better place where are these life scars wont bother him anymore.

sounds terrible

'Tis.

i cant watch these kind of things

You mean they make you sick or you hate watching something to sad? I have a really strong stomach, you'd HAVE to have a really strong stomach to watch what I saw on him last night..
Yeah it was sad, but...its life.

They've got a whole series of programs like that that they've been repeating here.. like "The girl who's older than her grandmother", she has Progeria which ages her body quicker than normal.
she is such a little sweetheart, so kid like except she's lost her hair and stuff. it's hard to explain.
if you go to the site and go to news and click on the spokeperson link there's some pics of megan and john who have it.

I've saw that show..I think. And I'm watching the show this thread is about now. And it is sad, but he's better off now.

They should just kill him, I know thats what I'd want.

Originally posted by Piggle Humsy
They've got a whole series of programs like that that they've been repeating here.. like "The girl who's older than her grandmother", she has Progeria which ages her body quicker than normal.
she is such a little sweetheart, so kid like except she's lost her hair and stuff. it's hard to explain.
if you go to the site and go to news and click on the spokeperson link there's some pics of megan and john who have it.
OooO Interesting.
Originally posted by SlipknoT
They should just kill him, I know thats what I'd want.
Lol.

I saw this quite some time ago. It was really depressing.

Well, maybe you did, but they just aired it two nights ago for the first time over here (That I know about), he died in 2003.

I saw it he had a funerul and had a grave and box and he flew the air plain and i was like aaaww thenthat had to change his cast and i was crying with i saw that he was on the wheel chair then he died i prayed and prayed

I'm going to help cherity

Good. That's a good thing of you to do. We have a charity for my cousin with cancer, well not HIS charity, but the "Kosair Children's Hospital" thats taking care of him and such. We're raising money for a benefit we're having next Friday, its to help raise money to pay for his surgeries, bills, etc. His FIRST bill..Just ONE of his bills, started out at 85,000 dollars. And then from there on the daily medical bills were 200-300 per day...Tough aint it?

yeah

that's so sad

Too true.

I cried

I would've..I mean I didnt because I guess I shouldnt pity him.

i dident see he whole thing i just saw 46 minutes of it

What parts do you think you missed? Like the beginning or end?

half of the end

Ah. Cool.