Living in shadows: A child's rare disorder

By Ashley Strickland, CNN

Updated 1639 GMT (0039 HKT) March 31, 2016

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 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 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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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.