SoulWinner
Commander
- Joined
- Apr 16, 2002
- Messages
- 2,423
Did any of you see this show on TV tonight? The guy suffered from a skin disease called EB. See here:<br /><br /> EB Skin Disease <br /><br />I first learned about this disease a few months ago. See, I found that this kid who had hung around with my son for a few years was having trouble at home. The more I learned the more concerned I became. I found that the boys mother killed herself when he was 7 or 8. She had been a raging alcoholic for years, stemming from an unhealthy relationship with her father. The boy's dad had never been close to him, basically rejected him from birth and giving all of his attention to the boy's younger brother and younger sister. The boy BTW is named Scott. The story gets worse. Scott was a senior in high school and nearly failing, he worked every weekend at Hardy's, but his father took his paychecks, after he bought his clothes and paid for his school lunches. He wasn't allowed inside his house when his father wasn't there (the step-mother didn't like him) and his father worked until 11:00 at night, getting in at around 12:00 at night. This meant Scott would fall asleep on the front porch, using his book back as a pillow. When his father got home, he would usually go in and lock the door leaving Scott on the porch.<br />When I learned all of this I flipped. I told my son Tom to pick Scott up and bring him over. Scott had always presented himself as a respectful, polite young man; but obviously mentally slower than all of his peers. We took him in and offered him a place to stay. His father was overjoyed when he went home to collect his few belongings and move in to our home.<br /><br />It wasn't long before I took notice of a couple things about our guest. He is obviously afflicted with fetal alcohol syndrome. We took him to the doctor and this was confirmed with blood tests, and answerers some questions about his mental abilities. But I also noticed that his skin was not right. If he helped me rake, his hands became immobilized with blisters and painful sores. We investigated and learned that he has the skin disease EB. It is no where near as bad as the guy on TV tonight, but it is bad, and effectively permanently disables him for life. He doesn't have the mental ability to make it with his head, and his skin keeps him from making it with his hands.<br /><br />Well here we all are. I love Scott, as does my wife, and we are in the process of adopting this 18 year old young man. He doesn't drive because he can't pass the drivers test. He is always tired and sleeps all the time, a side effect of EB. It is almost like he has narcolepsy, he can fall asleep in any situation, an immediately be in deep sleep. He probably does not need to behind the wheel. His mental capacity is a side effect of infantile alcohol syndrome. It is tough, to see a young guy with his whole life ahead of him, facing these difficulties. However, we love him and recognize that he is a wonderful person. He loves to go fishing with me. We have a really good time together. I can't wait to finish the adoption and give him my name.<br /><br />This disease is terrible. It causes a body odor that makes it imperative that we wash his bedding twice a week, and empty his hamper three time a week. We bought him some socks that greatly decreased the blisters and sores on his feet; they cost ten bucks a pair. No big deal. We took him to a dermatologist and got some medication for him, but there is no treatment nor cure for this disease. So we medicate as best we can; peroxide, antibiotic ointment, gauze, and lots of love.<br /><br />It is a totally screwed up thing to have wrong with your body. I feel terrible for Scott, but he is a happy young man. He has a girl friend that he is in love with, and he is always smiling. We will get him into counseling for the baggage he carries regarding his mother and the neglect he suffered under his father. We will work hard to leave an inheritance that will take care of both Tom and Scott, and keep Scott from ever having to work, because his body is not fit to do what his brain demands of him for survival. We will also contribute to the cause for finding a cure or treatment for this disease.<br /><br />I know this was really long, for those who read it all, thanks for listening. For those who take care of infirmed love ones, we salute you. It is the most rewarding thing in the world, no matter how hard.
