My brother wasrecenly diagnosed with Xeroderma Pigmentosum (or XP) . It is a rare inherited disease affecting both males and females. It causes a person to be extremely sensitive to the damaging effects of ultraviolet radiation. Undiagnosed and untreated, XP can lead to the early onset of skin cancer and blindness. In addition, approximately 20% of the people with XP develop progressive neurological disease.XP is an autosomal recessive disease caused by mutations in genes that are critical for DNA repair
Therre is NO cure for this diease. He wil develop skin cancer through out is life time. He has to wear a hat with plastic UV covering over it and evey inch of his skin has to be covered. Socks on his hands (because there are no gloves this small) pants,even in the summer time and a jacket. All his protective gear and special sunblock is really expensive. Also a lot lighting is not safe. Each person wih the disease has a UV meter,even in the shade,it's no safe. The only time he can go outsie freely is at night. Our house is covered with tin foil until we can getit properly tinted. He is only 2 years ol and he can't roam free i the out doors like a normal child. I want to raise money for his medical expenes, special,equapment,and quaity of life,meaing fun stuff we can buid the house.
