While most children relish their summer holidays at the beach or pool, 11-year-old Pol Dominguez spends his days indoors in Spain, avoiding the ultraviolet radiation that could be deadly for him.
Pol suffers from Xeroderma Pigmentosum (XP), a rare condition that makes his skin and eyes extremely sensitive to sunlight, preventing his body from repairing DNA damaged by solar exposure and putting him at high risk of developing cancer.
A life under cover
Pol’s case is severe: even brief sunlight exposure causes serious burns. With only 2.3 cases per million live births in Western Europe – and around 100 people living with XP in Spain – the hereditary disease is usually detected early when burns appear. Pol and his family, living in Barcelona, have drastically altered their lifestyle to avoid UV radiation.
Outside, Pol wears a hood, jacket, sunglasses, and gloves, even in winter, to prevent severe sunburns and blistering. In the summer, he stays indoors as much as possible. When he must go outside, the protective clothing is hot and uncomfortable.
School adaptations and daily life
Pol’s school has made special accommodations, adapting windows and lights to provide a safer environment. Despite these adjustments, he must bundle up for outdoor activities and use a UV meter to ensure his surroundings are safe.
“It’s very hot and I use a fan to make it cooler,” Pol told Reuters, speaking through a portable fan under the shield he wears over his face. At home, the windows are covered with protective film, blinds are kept low, and fans are used to maintain a well-ventilated, UV-proof environment, explains his mother, Xenia Aranda.
To enjoy the outdoors safely, Pol and his family venture out after sunset. “What we do is go out at night,” said Aranda. “At around 10 p.m. we say, ‘What would we like to do, Pol? Go to the beach, grab an 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 sets, he can finally go to the beach without protective gear. Simple pleasures like eating an ice cream outside or turning his towel into a superhero’s cape bring a smile to his face.
Rising risks amid climate change
As heatwaves become more frequent and intense due to climate change, the risks to Pol and others with XP increase. “The more hours of sunshine, the more solar damage. Therefore, more illness,” said Asuncion Vicente, a pediatric dermatologist at Barcelona’s Sant Joan de Deu hospital. Pol Dominguez’s story is a poignant reminder of the daily struggles faced by those with rare conditions like XP and the resilience required to live a normal life under extraordinary circumstances.