The Boy - Whos Skin Fell Off

mckayleesmom wrote: Did anybody watch that documentary on Discovery last night? Its about a man named Jonny Kennedy and since he was born his skin would fall off in clumps and blister. I didn't watch the beginning, but I believe it was also a form of cancer. The documentary was telling his life story and also of him planning his funeral because he only had a short time left to live. He wanted to raise as much money as he can for people with this disease and make people aware.

This was such a heartwrenching documentary...this guy is in complete agony 24/7. Taking of his clothes was like torture. Imagine when you have a cut on your foot and you put a sock on and sometimes it stickes......This guys whole body was like this so when he put on clothes...he had to take them off and parts would be stuck to his body. When he layed down to sleep...his head might get caught on the pillow....


I reccomend that people watch this movie. It is disturbing, but he teaches you alot. Makes me thankful that my problems are so minimal compared to what he went through.

lisar replied: I must have missed it. But wow just seeing what you wrote about it makes me think twice about my problems. I will have to search it up online and see when it is going to play again.

mom2my2cuties replied: I have a cousin whose son has this very same disorder. It is really sad.

MyBrownEyedBoy replied: I watched it when it first was released a couple months ago. Incredible story considering it covers his last few months and ends with his funeral. The beginning is Jonny Kennady choosing his own coffin and what he wants engraved on the side.
He suffered from Dystrophic Epidermolysis Bullosa. It is a disease where the body basically doesn't produce the connective tissue that binds your skin to the lower layers of your body.

From www.debra.org

booey2 replied: I saw it a while ago to. It really can but your life into perspective after watching shows like this. Makes me thankful for everything in my life.

Terri

Kirstenmumof3 replied: I saw this when it was on TLC. It was very sad!

holley79 replied: I saw it and I ached. That was horrible.

CantWait replied: I saw this on TLC also. They also showed a couple girls with the same disease.

redchief replied: I've heard of the condition (thanks for clarifying Kelly), but I haven't seen the documentary. I'll check it next time it's playing and I have the time. How horrible, and they call it rare, but 1 in 50,0000, while very unusual, certainly isn't extremely rare.

mom2my2cuties replied: Actually, Ed - the extreme cases of this disease are VERY VERY rare. My cousin's son, also has one of the most extreme cases of it. I haven't ever seen the baby, just the pictures, and he can't even be touched without getting a sore and stuff.

gr33n3y3z replied:
That is the one I saw and it was so painful to watch

Crystalina replied: I've watched Johnny's story a couple of times. He was such a sweetheart wasn't he. A typical male though when it came to looking at breasts. That part was really funny.
If I'm not mistaken the show starts off with him already dead in his wheelchair and his parent's are standing over him saying that they are glad the end has come because of all the suffering. I didn't catch that part until I watched it the second time. And it isn't a form of cancer but the actual condition causes skin cancer because the skin is constantly trying to heal itself. Because of that he got terminal skin cancer.

I love the way he even wanted to baffle people at his funeral with the whole Heinz 57 logo.

A&A'smommy replied: oh my I can't even find the words to describe how awful