Something New

Hello world..

Recently I saw a show on television which made me feel rather sad. The show was on TLC titled "The Boy Whose Skin Fell Off". The boy was named Jonny Kennedy who lived up to the age of 36 years old.Jonny lived in Northumberland. Jonny suffered from a rare and currently incurable genetic skin disorder known as Dystrophic Epidermolysis Bullosa also known as EB.

From watching the program I learned that EB causes a breakdown in the natural proteins that hold the skin together. The slightest touch can cause severe pain, blistering and sores. The blistering has to be dressed properly which sometimes takes 3 hours. Those things are bad enough.

Jonny worked with the filmmaker Patrick Collerton to film his life and death. Before his death he went to an event which was the Downing Street Reception in order to raise charity for the illness such as his. However on the way back from the event his health failed and Jonny died on September 26, 2003.It was really hard to watch the program but it was also quite moving to see.

After seeing it I realize that I take a lot of things for granted like getting dressed without flinching from blistering that would cause severe pain, I also take for granted just rolling over in my bed which in the program I saw was hard for Jonny. Seeing Jonny Kennedy was something. He never thought to complain much about his illness he saw things in a positive way. I had never heard about EB until I saw Jonny Kennedy on TLC. Jonny was a pretty great human being. I just wish I could have met him face to face. I really would have liked meeting him and getting to know him for myself.

I'm sorry world for writing about this subject but I just was thinking of this program today and I wanted to share it with you. I will write something new tomorrow. Good night world.....

I shall never forget the memory of Jonny