Alex Gentile plays on a playground in Valbrona, Italy. The 8-year-old has a rare disease that makes him incredibly sensitive to sunlight.
Alex undergoes an eye exam at a hospital in Trieste, Italy. Alex has an ulcerated cornea and suffers from photophobia, meaning that he is incredibly sensitive to light and it can have a painful, blinding effect on him. He's already losing his eyesight.
Alex has X-linked reticulate pigmentary disorder with systematic manifestations -- or what's more commonly called XLPDR. Only 18 people have been diagnosed with it.
A view of Valbrona, in the province of Como.
Alex is helped by his father as he prepares for judo lessons. His parents take him to the gym to keep him from feeling isolated.
Alex plays with his father on a playground. Alex's body lacks the ability to regulate his temperature, so he doesn't sweat, cry or have as much saliva as the average person.
Alex rests after playing. He often has to stop in order to keep his body temperature constant. An increase in body temperature causes strong headaches, reddening skin and even confusi