A young boy has skin as fragile as paper, thanks to a rare, genetic disorder that colors his world with excruciating pain. Still, despite it all, he remains happy, upbeat.
Dear Journal,
See this piece of paper?
Well, that's how my skin is. It is extremely fragile; even the slightest rubbing or friction can cause my skin to come off, causing me excruciating pain and agony.
Sometimes, blisters (some as large as water balloons) pop up; this leaves me prone to all sorts of overwhelming infections, many of which have put me into the hospital, fighting for my life.
I've had this condition ever since I can remember. My skin is covered with all sorts of scars or blisters; I look like I've been burned. To treat it, I have to have sunscreen or other protective lotions smeared on my skin.
If there's any open sores or blisters, I have to wear protective bandages, so I don't get sunburnt. If I do, I can get very, very sick; again, I usually end up in the hospital whenever this happens.
I have been in and out of the hospital so often, it's like my second home; all the nurses and doctors know me. It's a pain to be in the hospital, especially during holidays or on my birthday, but at times this is necessary in order to get me better.
My name is Travis Butcher, and I am ten. I was born with this skin condition, which is called Epidermyolysis Bullosa, or for short, EB.
I have four brothers. Three of them, like me, have EB: Trent, the youngest, has it as bad as I do; Tyler and Tyle have milder forms. Only Tedders (my nickname for him) is normal. We live in Hiawassee, Georgia.
It is a rare, genetic skin condition that runs in some families; only about 2,000-3,000 people have some degree of this disease. Very few have it as bad as I do.
We don't know what caused this in our family; no known relatives had/have this disease.
Besides the dressings and bandages, or using lotion every day, and staying out of the sun, I have to avoid getting overheated; that, too, causes gigantic problems. There's the option of a bone marrow transplant, but unfortunately, I don't qualify.
None of my family members match. Finding someone, a stranger with even a remote match, has proven to be impossible, at best.
I am like any other boy, even with my paper-thin skin. I love to dance (I'm especially good at poppin'; taught myself how to pop a few years ago), sing, play the guitar, read, play frisbee, play baseball (I only play it when the weather's cloudy and cool or late at night, when the sun isn't out), play on the computer, write stories or poems (mostly about kids who have disabilities), and watch tv (my favorite show is "America's Got Talent"; I also like "So You Think You Can Dance" and "Dancin' With The Stars", but that show is over; it just ended a few weeks back).
Well, I am going to go now; we are due to go to lunch. Am at school as I write this; was bored, so I decided to sneak a peek at my computer, fire off a quick journal entry, so you can know at least something about me besides the fact that I am known as the Kid With The Paper-Thin Skin.
Blister-Boy. Paper-boy. Burn Boy. Monster. I've heard them all. My skin might be physically fragile, but I've learned to develop a hard outer shell to stave off the teasing, the stares, the comments.
Most of the time.
There's a fun loving kid under the paper thin skin, the scars, the blisters. I want people to get to know the ME underneath the appearance. I'm a normal boy; I have the same interests. I have the same feelings.
Please don't shun me because of how I look. I can teach you something, if only you'll get to know me. ME.
Karen I have heard of EB, they also call it something like butterfly syndome read of an eighteen year old girl who had this disorder thank you for bringing it to light
God Bless
Michelle~
Such rare and horrifying diseases seldom get the research grants needed to seek cures or prevention. What a tenuous situation for those afflicted. Thanks for sharing this heart wrenching story with your friends at the den. God bless. JMW
Looking at that picture made me cringe. It made me hurt looking at it. I cannot imagine anyone living with that. And kudos to the boy with the good attitude that doesn't let it rule his life.
This is certainly the saddest story of yours that I've read. I can't even begin to imagine how challenging it would be to live with this young man's sickness. I have all the admiration in the world for someone who lives with such disabilities.
Travis and his brothers are united by their EB and a love for life - they'll weather anything together. :) An excellent, informative write, very well penned. BRAVA, Karen!!
Travis, Evander Holyfield in Atlanta have a kids program, not only for boxing but for all kinds of things that kids are interested to.
Send him a few words and ask him to sen you a couple of videos with all those kids in action and you gonna get a lot of penpals, I promise you that!
Oh my, this is such a sad story, but factual and eye opening and heart touching. Thank you for this information, I shall send healing energy to all that suffer this awful condition.
Peace, love, and light to you,
Amber "V"
Re-Release! No longer back-listed. Return to the Olde Ways. The hustle and bustle of modern day life has brought many of us to a quick fix attitude.This book is for those of you who are fed up; have looked at your life and your loved ones and realize