A young teenager with a debilitating rare disease talks about her life and how her illness has dramatically altered her life.
My name is Gigi Redfern, and I am 13 years old; but my life is about as far from "normal" as you can possibly imagine. I am severely physically handicapped with a rare disease that is beyond my control.
No, I don't use crutches or wear leg braces to walk (I can walk just fine, thank you!), wear hearing aids in my ears (ditto; my hearing is great!), or have problems learning (in fact, mommy tells me that I am very bright for my age!); but I am handicapped just the same. I have a very rare disease known as xeroderma pigmentosum; and apparently I was born with this. I started having problems when I was very young, and all my life has been filled with incredible pain and suffering.
Xeroderma pigmentosum means that my skin absorbs too much in the way of light; and if exposed to any form of bright light (especially the sunlight), I get awful, excruciatingly painful blisters all over my skin; and I am very susceptible to skin cancer. I also have problems with my vision; and whenever I have to go outside I have to wear long sleeved shirts and jeans and socks; even in the summer, which is absolute hell. I also have to wear sunscreen constantly, and I have to wear a hat to protect my head, let alone, my face. I also have to take medications to help my condition, and I can get very sick if I am exposed to the sunlight after just a few minutes. I also wear my extra dark sunglasses, even when I am inside.
The only time I can get relief from the intense pain and/or itching is if I stay inside; and the darker the room, the better it is for me. Too much in the way of light, especially if it's the sun, can kill me. That's how dangerous this disease is for me.
I CAN do things like any teenager; the only thing is I have to do them in the dark. At night, I can go outside and shoot baskets with my sisters Hollie and Kelsie (they are twins; and they are both 11) and my little brother, Kyle, who is 7. I also can play around on the swingset or sleep outside in our tent in our backyard if it isn't too cold or raining or snowing out. If it is, then I sleep in the basement with just a flashlight for light so I can see where I am going, in case I have to get up in the middle of the night; and I also wear my sunglasses to protect my eyes.
I guess you can call me a REAL "night owl" because I do everything at night. I have no choice. If I am exposed to light I just could maybe get extremely sick after just a few minutes; or I could even die. So this is my life living with xeroderma pigmentosum.
Because of my illness, I am homeschooled, and I don't have very many in the way of friends; but that is okay. At least I have my twin sisters and my little brother to keep me company; they, and also my cat, "Fudgie", who is a fat Maine Coon with a goofy personality and a body that is incredibly soft and furry! But I still wish I had friends my age; I hate being alone all the time, and I hate the implications my disease causes for me! I just wish I were a normal kid, and of course, I wish I never had this xeroderma pigmentosum crap! My life is anything BUT normal, and it's nothing but a giant PAIN IN THE ASS!!! >:(
(((HUGS))) for this outstanding, informative write...why kids have to suffer...*tears* when all they want is to be normal. keep being the voice of the disabled, you have a Gift of describing what they all want...to be treated like anyone else. *applause* nay, a *STANDING OVATION* (((HUGS))) and love, karla. :)
Colorful interactive book for teaching children the ABC's using God’s creation of the animal kingdom and featuring some of His most exotic creature. More importantly the book segues into the very special love God has for children.
Colorful interactive book for teaching children the ABC's using God’s creation of the animal kingdom and featuring some of His most exotic creature. More importantly the book segues into the very special love God has for children.
My name is Gigi Redfern, and I am 13 years old; but my life is about as far from "normal" as you can possibly imagine. I am severely physically handicapped with a rare disease that is beyond my control.
