Living in shadows: A child's rare disorder
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Alex Gentile plays on a playground in Valbrona, Italy. The 8-year-old has a rare disease that makes him incredibly sensitive to sunlight.
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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.
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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.
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A view of Valbrona, in the province of Como.
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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.
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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.
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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 confusion.
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Patrizia, Alex's mother, is always ready to protect her son from direct sunlight.
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