The Boy Whose Skin Fell Off

Was flipping around the TV and HBO was showing a double whammy of unbelievably horrendous medical conditions, so I turned to my twin sister and said, "Hey this looks like fun," - truly I love documentaries - so we started watching it. At first I thought Jonni Kennedy was a young man, but then it was explained that due to his condition, he never went through puberty, thus the high voice and smaller body. He was on a crusade to raise money for his cause. He had the most wonderful sense of humor combined with a beautiful sense of spirituality... I cried, watched some more, laughed, got up to get another Kleenex, then cried some more. Once Jonni Kennedy's "time was up" he flew to heaven to be with the angels. He was more than ready; he had learned his lessons from this life and he was free. I highly recommend this. If you do not fall in love with this guy, you have no heart.

i was greatly moved when i watched the movie.how jonny could keep such hope and faith was amazing. so many people only care about what they want , and fuss about all the things they don't have . and they are such small things ,like chothes,money a new car . i've seen people in tears because of a blemish. this movie brings everything back to the basics . love,hope the beauty of the simple but so important things in life.it makes our everyday problems seen for what they are Small and really unimportant. you watch this boy and you realize as long as you have been blessed with food ,a roof over your head and your loved ones around you .you are truly blessed.and the saying stop and smell the roses truly has a new meaning.and i know jonny will see this and i want to thank him so much for sharing such faith,strenght,and humor with me .thank you jonny i know you soar the heavens and bring much love and laughter to the heavens above.

I couldn't hold back the tears when I watched this beautiful documentary. It was heart-breaking, disturbing, and inspiring all in one. I recommend this documentary to anyone seeking something that will make them think about what they are doing with their own lives. Or simply, something that will make you think. You watch as John lives through the last couple months of his life. You watch as he goes through his days with a positive attitude. At one point you begin to see that he is truly an amazing individual. You begin to understand that he has something to teach all of us. His life and struggles will make you cry, laugh, and find that life's a lot easier to live if you just take it one day at a time.

A remarkable documentary about a truly remarkable young man who faced utter adversity everyday of his short life and met that impostor with strength and humor. Therer are some uncomfortable viewing scene's but John's disease and the suffering he endured constantly is not easy viewing. Look beyond this and find a spirited, rounded, funny and courageous soul trapped in a ravaged body. I watched this and left it feeling inspired by the incredible strength John possessed right up to the end.

I highly recommend this documentary both for its thoughtful delivery of the final months of John's life and for its impact it no doubt has had on bringing awareness on EB.

This is one of the best documentaries ever made. One that everyone should watch before they shuffle off this mortal coil. Utterly heartbreaking, eye opening and thought provoking. It will stay in your mind somewhere for a long time after watching it. What a fine human being Jonny was. Utterly wise, witty and full of important values and lessons to teach those of us who are still here. It was made in an excellent way, and is flawless in its delivery from the start to the end. You will likely feel very affected by this film, I know I was the first time I watched it when it first aired almost 20 years ago. I can almost guarantee you will get goosebumps, tears, and as mentioned before. It will probably be one of the most moving and thought provoking documentaries you will ever watch in your life.