The story of the boy who lives in the shadows because he can’t see the sun

Pol Dominguez 11, is enjoying his summer holidays in Spain. But unlike most children his age, he does not spend his days at the beach or the swimming pool, but stays at home to avoid the ultraviolet rays that could even end his life.

Domínguez suffers from xeroderma pigmentosum (XP), a highly unusual condition that affects his skin and eyes. XP patients are unable to repair their DNA following sun damage, putting them at high risk of developing cancer.

Your case is extreme: even brief exposure to the sun causes severe burns.

With only 2.3 cases per million live births in Western Europe, the hereditary disease is usually detected early, as soon as burns appear.

Dominguez and his family, who live in Barcelona, ​​have radically changed their habits to avoid exposure to UV rays.

To avoid serious sunburn and blisters, Domínguez wears a hoodie, jacket, sunglasses and gloves outside the house, even in winter.

In summer, you stay at home as much as possible, but when you have to go out, the protective clothing to take care of your health is hot and uncomfortable.

Domínguez’s school has adapted windows and lighting so he can live as normal a life as possible, although he must dress warmly for outdoor activities and wear a UV meter to check that the environment is safe.

“Because it’s very hot, I use a fan and this way I’m a little cooler,” he told Reuters on one of his last days of school, using a portable fan under the protection he wears over his face.

Dominguez’s home is UV-resistant, with protective films on the windows, blinds drawn and fans to keep the environment well ventilated, said his mother, Xènia Aranda.

“What we do is go out at night,” Aranda said. “Around 10 p.m., we say, ‘What do we want to do, Pol?’ Go to the beach, get some ice cream, go for a run?’

Pol spends part of the summer with his grandfather Ferran Aranda in Portbou, near the French border.

When the sun goes down, you can finally go to the beach without protective gear. Just eating an ice cream outdoors or transforming your towel into a superhero cape brings a smile of delight.

As heat waves become more frequent and intense and spread throughout the seasons due to climate change, the risks to Pol and others like him increase.

“The more hours of sunlight, the greater the damage caused by the sun. Therefore, more diseases,” says Asunción Vicente, a pediatric dermatologist at Sant Joan de Déu Hospital in Barcelona.