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Status: Finished  |  Genre: Health and Fitness  |  House: Booksie Classic
A young girl lives with a rare and incurable condition.

Submitted: September 07, 2009

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Submitted: September 07, 2009



She is only six years old. She has curly blond hair, big blue eyes, glasses that she is constantly pushing up her small, round nose. She has slightly pointed ears, a tiny smile, nearly invisible eyebrows and eyelashes, and a frame exceptionally small for her age (about thirty pounds). She has extremely pale skin covered in red blotches and scabs scattered across almost every inch of her visible skin beneath her shirt which has an abnormally wide neck and loose sleeves. Her name is Kaylee, and she is going to die.

If you talk to her, she will show you that she has special skin and if she falls or gets rubbed too hard it will simply fall off. She will tell you how this could give her canceror cause an infection that could end her life young. It is an incurable condition, but someday she will be in heaven where her skin will never get hurt again.

Her abnormally advanced speech and intelligence may surprise youif you can get past her shyness.  If she is feeling particularly talkative or if it is not a bad day, she may tell you that she has epidermolysis bullosa, which is what makes her skin special.That she has to be careful when she plays or she will get a bubble on her skin. When this happens, she must take a lancet or her surgical scissors and pop the bubble to drain it. Then she must take her mepitel bandages, which are specially made not torip her skin, and cover the bandagesin diaper rash cream to keep

the open sore from drying to them.Then she puts gauze around the sore, and takes a piece of nylon her mother cut from a small pair of tights to hold the bandage on her arm or leg. If the sore ison her back, neck, or stomach, she willtell you that she had to be careful to make certain the bandagewill not fall off.

If you came early, she would show you how she wakes up at seven in the morning. She would introduce you to her big,black poodle named Slowy, and you would see how he protects her and acts as her service dog. Then she would go to the living room with her little medical kit and gets dressed. When she gets dressed, her mother brings her a sippycup. Since sucking could rip the skin in her mouth, the cup has been altered so thatit has a hole in the top just the right size for her small mouth. The cup has about eight ounces food that is high in calories and picked especially for its vitamins and protein, it is has been blended smooth so it does not rip her throat. You would see that when a bandage falls off in her sleep, her pajamas dry to the sore, and she will spend fifteen minutes crying in between sips of her food as she slowly pulls it off. Then you will see how she goes over her own skin with a critical eye, using scissors her mother has sterilized with a lighter to cut dead skin from her legs, arms, and stomach, and to lance blisters that could break and dry to her clothes later. She treats, dresses, and bandages the broken sores before she moves on to her knees. Then she tells Slowy not to be silly and bark at the mailman, because he comes every day.

She would then show you how her knees are nearly always one big,open sorefrom small falls or sitting on her knees. She would use special medicine to keep the sores from getting infected, than she would bandage the soresup. Through all of this, she would continue eating her

food, using little sips at a time and coughing and choking as it rubs the inside of her mouth,

causing potential damage for later. After she has done this andsince she has been a big girl,she gets a movie. She would let you pick it just to be nice.

She would then show you how she tends her feet, sure to have a special piece of cloth that goes between each of her toes, and making sure that if she does get a sore there; her toes do now grow together like so many other children with EB. She puts two pairs of socks on, both inside out so that the seams do not rub against and damage her feet. She would tell you with a smile and a laugh that her wide-necked shirts are to keep from ripping her ears off, because she likes them.

After this, she would show you all of her pants that her mother made for her with no seams on the inside to hurt her legs. Then she would put away all of her medical supplies, and grab her hairbrush. She needs to be careful not to brush too hard, or she will hurt her head. Then her mom puts her hair into a ponytail. 

If you decided to stay longer, she would read stories that her mother picked for her and work on small math problems. She would show you her own small computerat a small deskwhere she types because a pencil hurts her hand, and her very own Disney tablet that she uses to draw pictures in the Disney art program.

If you were still willing to stay even longer, she would show you how she eats a snack and then her lunch in exactly the same manner that she ate her breakfast. If she is good and eats all of her food even though it hurts, she gets to have play time.

She will show you how she plays if you stay. She will dress up in her Snow White Disney princess dress, but not the shoes that hurt her feet. She will dance around, laugh, and talk

to both you and Slowy. You will probably even forget she even has this autoimmune disease. You will play with her, laugh, joke, and forget that she is going to die.

If you are still around in two years when she is eight years old, she will show you the news report on USA Today. One little boy has been cured of the same disease she has, and you will see hope on her face. You will see that all along she has understood the fact that she was going to die, and known that she could not fight this on her own. You will see her eyebrows wrinkled in concern as her parents tell her that only some of the people with skin like hers can have the surgery. You will see them ask her if she wants the test, and you will see her praying at her bedside as she considers. Later, you will see her bravely decide that she does want to have the test. You will also see the excitement on her face as she finds out that she is one of the few who qualifies to have the operation.

A few weeks later, if you still care to be there, you will see her reading a news report on her computer. A little girl, the second to go in for the operation, has died. You will notice the concerned expression on her face as she reads about the deceased patient who was younger than she. You will see her parents sit down and discuss this with her, and you will be amazed at how she seems to understand everything as she gravely nods. You will see her thoughts on her face,and her parent’s expression, which you will find a nearly unbearable sight. You will see her struggle with this over the next few days, praying every night. Eventually, you will see her tell her parents she still wants the operation, and at last you will see all three of them with a mixture of hope and fear on their faces that makes you want to look away. When you finally do, you will

see your reflection faintly in the window and find that same look on your face staring back at you.

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