Hi! My name is Shelley Madison. I live with my mother and my brother and sister in a suburb of Portland, Oregon U.S.A. I have Xeroderma Pigmentosum. I was diagnosed before my 2nd birthday. I am now 10 years old. Because of my condition and because I get blistering burns so quickly, my mother does not let me play outside until it is completely dark. We have protective film on all windows of our house and in our car.

I am much luckier than most "XP" patients though, because I have had such little exposure to daylight my skin is in really good condition and I get told my skin is still baby-soft. I have had no cancers or other effects that XP causes other than I do have the freckles.

So while inside I do the things that all other 10 year olds do. I watch TV, play Nintendo, play on the computer, read, put puzzles together and of couse listen to the "Backstreet Boys." I also play with my dog, Prince.

In September, 1999 when school starts again I will be in the 5th grade. Because my mother has to work, I go to a public school. I have gone to this school since I was in kindergarten. All the windows of the school have been protected and all the lights are also protected. I just can't go out to recess. I always get to pick a friend to stay in with me and play computers or something.

A few times I have been taken to the Pacific Coast to run along the beach at night. This has been very fun. I even got to go see Keiko, the whale, when he was kept at Newport, Oregon as the veiwing area was underground so it was dark.

My sister's name is Shauna and my brother's name is Nick. They are both older than me. My sister is 14 and my brother is 11. My brother always plays games with me . We also play wrestling. When it is dark and I can go outside my brother always plays tag with me.

I am so happy that I got the chance to make my own webpage! Thanks to everyone that made this possible.