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 Gentile plays on a playground in Valbrona, Italy. The 8-year-old has a rare disease that makes him incredibly sensitive to sunlight.
Luca Catalano Gonzaga/Witness Image
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 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.
Luca Catalano Gonzaga/Witness Image
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.
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.
Luca Catalano Gonzaga/Witness Image
A view of Valbrona, in the province of Como.
A view of Valbrona, in the province of Como.
Luca Catalano Gonzaga/Witness Image
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 is helped by his father as he prepares for judo lessons. His parents take him to the gym to keep him from feeling isolated.
Luca Catalano Gonzaga/Witness Image
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 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.
Luca Catalano Gonzaga/Witness Image
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.
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.
Luca Catalano Gonzaga/Witness Image
Patrizia, Alex's mother, is always ready to protect her son from direct sunlight.
Patrizia, Alex's mother, is always ready to protect her son from direct sunlight.
Luca Catalano Gonzaga/Witness Image
Alex plays hide-and-seek with his sister in a supermarket.
Alex plays hide-and-seek with his sister in a supermarket.
Luca Catalano Gonzaga/Witness Image
To minimize discomfort to his eyes, Alex has to use special eye drops at least 10 times a day.
To minimize discomfort to his eyes, Alex has to use special eye drops at least 10 times a day.
Luca Catalano Gonzaga/Witness Image
Alex plays with his parrot and his dog.
Alex plays with his parrot and his dog.
Luca Catalano Gonzaga/Witness Image
Patrizia takes Alex's temperature.
Patrizia takes Alex's temperature.
Luca Catalano Gonzaga/Witness Image
After waking up at 6 a.m., Alex curls up on the couch for about 10 minutes to let his eyes gradually adjust to the light.
After waking up at 6 a.m., Alex curls up on the couch for about 10 minutes to let his eyes gradually adjust to the light.
Luca Catalano Gonzaga/Witness Image
Alex plays in his hotel room in Trieste, where he undergoes checkups at the city hospital every six months.
Alex plays in his hotel room in Trieste, where he undergoes checkups at the city hospital every six months.
Luca Catalano Gonzaga/Witness Image