I have a very rare condition called xeroderma pigmentosum.  Basically what that means is my skin is so sensitive, I can get huge blisters just from being out in the sun; I have to wear long sleeves and wear special medicated cream to keep my skin moist, as well as wear shades, and wear something to cover my head.

If I get exposed to the sun for more than five minutes (IF that if I'm lucky), I can get very huge, painful blisters and they can get infected, and then I end up in the hospital.  I am also susceptible to skin cancer, so I have to be extremely careful.

I am 12 years old and am in the sixth grade.  I am homeschooled.  I am an only child.  I don't have any brothers and sisters.

What I like to do mainly is listen to music (country) and read.  In addition, I like to draw, write stories or poems, and ride my bike (again at night; same if I play basketball or frisbee).  My room is kept dark, so no sunlight gets on me; the light from the sun or daylight hurts my eyes; they are extremely sensitive.

It is not easy living with a condition like mine, but I've done pretty well, all things considering.  I just pray that continues and that I don't get cancer; that would just suck!!  I pray that God protects me each and every day.

Well, I gotta go; it's time to switch classes; I will write in here again soon!  Sorry it's not much, but this is how it is for me and how I live my life.  Take care and God bless!

~Doreen.

~To be continued.~