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lawyerlee
06-27-2005, 09:04 PM
I saw the most amazing program on TLC tonight called The Boy Whose Skin Fell Off about a 36-year-old man named Jonny who was born with a rare genetic condition that made his skin blister and come off. He only had few more months to live before he died of skin cancer and had some very specific things he wanted to do that are documented in the program. He was an incredible and amazing man. He suffered a lot and experienced an incredible amount of pain, but he wasn't an angry person. He also wasn't an unreal saint. He cried at times. He felt sorry for himself at times. He was realistic about the fact that death is a part of life, and as such, he planned his own funeral. He was such an inspiration to me. I was feeling so sorry for myself today, thinking about how much I hate my chronic migraines and how sad I am that my grandmother is sick and dying. But something like this reminds me of all the blessings I have in my life, such as a loving husband, a successful career, and the ability to keep living, even if I am sick. I highly recommend everyone try to watch this program if you can TiVo or tape it. It was so wonderful. :)

The Boy Whose Skin Fell Off on TLC (http://tlc.discovery.com/fansites/boywhoseskinfelloff/boywhoseskinfelloff.html)

Camdynlyn
06-27-2005, 09:07 PM
I watched it last night! I stayed up really late watching it and I was amazed at his strength and humor (about seeing the actresses/model's boobs when she bent over!:) ). Great story and I learned a lot. I was so glad to see them rejoicing him at his funeral. I have always heard mourn at a birth, rejoice at a funeral. No clue why to mourn but rejoice because of the wonderful life the person lived! I thought it was great! :D

claribella
06-27-2005, 10:20 PM
I saw that yesterday too! It was very moving. His attitude on his condition and life was just so positive. He was inspirational. I'm glad I caught it.

Kimberland30
06-28-2005, 08:02 AM
I set our DVR to record it but haven't seen it yet. Thanks for reminding me about it! Maybe DH and I will watch it tonight.

seapod
07-01-2005, 05:38 PM
I caught the last 5 minutes of it. I'll have to see when it might be back on again.

NoFreakinWay
07-01-2005, 09:40 PM
A beautiful story, definitely told the way he wanted it to be told.