Boy in Spain lives in permanent shade to survive dangerous sunlight
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Pol Dominguez Aranda wears a hood, jacket, sunglasses and gloves outside, even in winter, to avoid severe sunburn and blistering.
PHOTO: REUTERS
BARCELONA/PORTBOU, Spain - Pol Dominguez Aranda, 11, is enjoying his summer holidays in Spain. But unlike most children his age, he does not spend his days at the beach or pool, instead staying indoors to avoid ultraviolet radiation that could be deadly for him.
Pol has xeroderma pigmentosum (XP), a rare condition that affects his skin and eyes. Patients are unable to repair their DNA from solar damage, which puts them at high risk of developing cancer.
His case is extreme: Even brief exposure to sunlight 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 condition is usually detected early when burns appear.
Pol and his family, who live in Barcelona, have radically modified their habits to avoid exposure to UV radiation.
To avoid severe sunburns and blistering, Pol wears a hood, jacket, sunglasses and gloves outside, even in winter.
In summer, he stays indoors as much as possible, but when he does need to leave the house, the protective clothing is hot and uncomfortable.
Pol’s school has adapted windows and lights so he can have as normal a life as possible, although he needs to bundle up for outside activities and carries a UV meter to check that an environment is safe.
"It's very hot and I use a fan to make it cooler," he told Reuters, on one of his last days of school, using a portable fan underneath the shield he wears over his face.
Pol Dominguez Aranda suffers from xeroderma pigmentosum (XP), a rare condition that means his body cannot repair sun damage.
PHOTO: REUTERS
Pol’s home is UV-light-proof, with protective film on windows, blinds lowered and fans to keep the environment well-ventilated, said his mother, Mrs Xenia Aranda.
"What we do is go out at night," Ms Aranda said. "At around 10pm, we say: 'What would we like to do, Pol? Go to the beach, grab an ice cream, go for a run?'"
Pol is spending part of the summer with his grandparent, Mr Ferran Aranda, in Portbou, near the French border.
When the sun sets, he can finally go to the beach without protective gear. Just eating an ice cream outside or turning his towel into a superhero's cape brings a smile of delight to his face.
Pol’s school has adapted windows and lights so he can have as normal a life as possible.
PHOTO: REUTERS
As heatwaves become more frequent and intense and spread across seasons due to climate change, the risks to Pol and others like him increase.
"The more hours of sunshine, the more solar damage. Therefore more illness," said Dr Asuncion Vicente, a paediatric dermatologist at Barcelona's Sant Joan de Deu hospital. REUTERS
