The Boy Whose Skin Fell Off

[CatieElphie1]

Posted: 6/29/05 at 12:30am

Did anyone watch this when it came on TLC...it was so sad!

[UglyBug]

Posted: 6/29/05 at 12:45am

Damn I wanted to watch! Now I will go see if they are showing it again...

[Rose_MacShane]

Posted: 6/29/05 at 12:50am

What on earth are you talking about?

[StickToPriest]

Posted: 6/29/05 at 12:51am

Why/How did his skin fall off?

[FosseBoi]

Posted: 6/29/05 at 12:54am

I saw that last night! It was kind of disturbing. It was VERY sad though... What was the stuff on top of his head? I have an idea of what it might be, but I'm not sure.

[Unknown User]

Posted: 6/29/05 at 12:55am

It was so sad.

[Rose_MacShane]

Posted: 6/29/05 at 12:58am

Again...what is it about?

[CatieElphie1]

Posted: 6/29/05 at 1:05am

okay. so it was a documentary this guy had made that was to raise money for his disease : EB. It's a disease where the dermis and epidermis of the skin don't function right, so any sort of touch or abraision makes your skin blister and heal, blister and heal.
Well...this guy had it so bad that he actually lost the use of his hands because of the amount of scar tissue, and he got cancer, so his wounds wouldn't heal. So: they got all infected and painful and stuff and nasty as hell.
But: he had this amazing, beautiful spirit that really inspired everyone around him.
Then: well, not then, but the point of the documentary was to follow him around in his last 10 or so months of life, because when he got cancer he got 12 months to live.
So: it shows him, and everyone around him, sort of preparing for his death
and then at the end he dies, but it's okay because he sort of set it up so his funeral was funny and evrybody knew that at least he wasn't suffering anymore...

[CatieElphie1]

Posted: 6/29/05 at 1:06am

oh and the stuff on his head was pus(s?) I don't know the green stuff in wounds when they get infected. It was from his hat.

a photo..it dosn't really show anything too bad, but you ge the idea

and the second one is funny...because in the movie he's like "I could see down her shirt the whole time..." it made me chuckle

Updated On: 6/29/05 at 01:06 AM

[Rose_MacShane]

Posted: 6/29/05 at 1:43am

Oh my God. Just...oh my God...

[FosseBoi]

Posted: 6/29/05 at 1:53am

Yeah! I agree with who ever said he had an amazing spirit!He was SO fine with the fact that he was going to pass away, it was great. I mean that as..at least he wasnt spending everyday dwelling on it. He talked about how he would think of a place with trees and a field, with the breeze flowing, or something like that. And he said he would imagin himself in that place and that alwas fine.

He also said we was not going to one of those angel thats sits o clouds and play a harp. Hes going to fly down to the gorund, and whip back up. 'Youve got to spice things up a bit," he said. I LOVED that part! It was so funny!

[Jimmyojimmy]

Posted: 6/29/05 at 2:02am

That is so sad, i wanna see it. Does anybody know when it is to air again?

[Unknown User]

Posted: 6/29/05 at 2:21am

I wanted to see this, but forgot until it was too late.

[courtneyanne]

Posted: 6/29/05 at 4:15am

Haha, okay. The first picture up there is sooo adorable.

[EverythingIsRENT]

Posted: 6/29/05 at 10:08am

I had planed to watch this but I forgot...how old was the boy when he died?? I have never heard of a disease like that before.

[lovettespies]

Posted: 6/29/05 at 10:41am

It was depressing to watch, but also hopeful. I thought his messages about death and life and disease were beutifully inspiring and clear.

[CatieElphie1]

Posted: 6/29/05 at 12:39pm

He was 36 when he died, but he looked alot younger cuz his disease prevented him from going through puberty and his voice was really high from all the scar tissue that formed on his vocal cords.

[One Song Glory]

Posted: 6/29/05 at 9:11pm

Inspiring story.

[AbbaRabbit]

Posted: 6/29/05 at 9:21pm

there was a girl on maury last year who has either the same condition he had, or something very similar. it was very touching. she was only like 12 or 13 and couldn't hold a pencil. she wanted to be a writer and they had a special computer made for her so she could type without any fingers... they said the disease is sometimes refered to as "the butterfly disease" becaue of how delicate and fragile it makes the person's skin.

[Sporti2005]

Posted: 6/29/05 at 11:01pm

i watched it.

i can't imagine planning my own funeral...it was incredibly inspirational, though, that he was so good-natured about it. i mean, of course he had his emotional moments, but overall he seemed quite at peace with himself - very moving.

i didn't see the end of it...but did he end up with the beans on his coffin?

[orangeskittles]

Posted: 6/29/05 at 11:09pm

I saw the commercial for this and it freaked me out. Especially the VO with the guy saying "I'm X and that's me in the coffin, you're watching my funeral." Um, yikes. Just the fact that he had to record this ahead of time seemed so morbid and twisted.

[Madame X2]

Posted: 6/29/05 at 11:25pm

^^^
That commercial scared me so badly! I feel really bad for that guy but that commercial really freaked me out.

[Broadway_freak]

Posted: 6/29/05 at 11:52pm

It was EXTREMLEY sad. It made me grateful for everything I have. People take everything for granted, and I'm glad he's in a much better place. If you missed it, be sure not to miss it.

[CatieElphie1]

Posted: 6/29/05 at 11:57pm

indeed. So touching. Also, I agree. i would be horrified to have to plan my own funeral. I couldn't do it.

[justme2]

Posted: 6/30/05 at 12:28am

I watched it, laughing and crying at the same time. That man's sense of humor (he was over 30 years old!) was incredible. When his brother sprayed the fly that was hanging around him while they were in the bar and he said something (I can't even remember!) so witty about "well, that should kill anything around me!", I was laughing out loud.

I cannot imagine living in the kind of agony he was in and still be able to maintain ANY sense of humor. And I thought his funeral with the "Queen" song playing was perfect.