Hello! My name is Chevon Demetrius Jones. I am 12 years old. I live with my parents in Woonsocket, Rhode Island. I was born in Miami, Florida, but we moved here when I was about three or therabouts; I really don't remember; was too young then.
I am not like most kids. See, I was born with a special problem that affects my daily existance. I was born with a rare skin condtion called epidermolysis bullosa (EB for short). Basically, that means that my skin is fragile. Very much so. Any slight pressure or rubbing can cause painful blisters to pop up and bleed; if it gets really bad I have to go to the hospital to get it treated and bandaged. Sometimes I will end up getting admitted because of an infection. Infections with my disease can only spell one thing: trouble! Major trouble!
I've been in the hospital more times than one can shake a stick at. It's a pain (LITERALLY, in my case!).
I have to wear special lotion to keep my skin moistened and have bandages put on my blisters every day so the lotion can stay on and do its work (and protect my skin in the process). I then can wear long sleeves or pants or socks without any problem; if I didn't have the lotion or the bandages on, my skin would crack open and bleed horribly and then it would mean "HOSPITAL TIME!" for me.
I don't want to do that, especially since New Year's Day IS tomorrow!! That would NOT be a cool way to start the year off right!!
I have to be extremely careful when I got outside to play. If I am out in the sun, i can only be out for maybe 15 minutes tops. I run the risk of getting skin cancer, so I have to be ever vigilent and try to keep from getting sunburned. NOT easy, especially since my skin Is so fragile!
I am often known as a "Butterly Child". My skin is as fragile as a butterfly's wings; this is why I often have so many problems with blisters and stuff. People often don't understand why I have to wear long sleeves throughout the year or wear shades (or use a wheelchair when out in public). It's because when I walk, just the rubbing of my leg against the other can cause excruciating pain and/or form more blisters and then there you go. More doctors, more hospital stays. GRRRR!!
I wouldn't wish this, this epidermolysis bullosa, on ANYBODY!! It's akin to having second to third degree burns, in terms of pain level. It's awful!! Sometimes the pain gets so bad I throw up or pass out. I then have to go to the hospital to get IVs stuck in me and have powerful drugs to try to quell the pain and discomfort. When treating me, everyone has to gown up and treat me like a newborn baby ... I'm about as fragile as one!
No, make that more like an egg. Or the wings of a butterfly. Yeah, that's more like how my skin is.
Even with all my pain, my disability issues, or my frequent hospital stays, I am still a normal kid. I love to have fun: I love to play chess, play games on the computer, read, watch movies (action and sports stories are my bag), draw, write stories or poems (mostly about my experiences as a person with EB), play with our Wii system that we got for Christmas (FTW!!), go to church every Sunday (we're Pentecostals; we go to an Assembly of God/Pentecostal church), read my Bible, sing, and help with the homeless every Friday or on special days like Christmas and Thankgiving.
When I grow up (that is, if skin cancer doesn't claim me first; I am predisposed to get it because my skin is so fragile), I want to be a preacher and tell others about Jesus and what He's done for me. Jesus has gotten me through so much; I don't know what I would do without Him!
Well, I am going to go to bed. It's snowing heavily outside and it's also lightning and thundering out. It's really cool! I will write in here again soon; I just wanted to share my story and wish everyone a Happy New Year! God bless; talk to you soon!
~To be continued.~