BARCELONA/PORTBOU, Spain (Reuters) – 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 pool, instead staying indoors to avoid ultraviolet radiation that could be deadly for him. The boy survives sunlight with these critical measures, enabling him to have a semblance of normalcy in his activities.
Dominguez has Xeroderma Pigmentosum (XP), a rare disease 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. #boy survives sunlight
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 disease is usually detected early when burns appear.
Dominguez and his family, who live in Barcelona, have radically modified their habits to avoid exposure to UV radiation. #boy survives sunlight
To avoid severe sunburns and blistering, Dominguez 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.
Dominguez’ 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.
The boy survives sunlight with the help of a dedicated support system, allowing him to thrive despite the challenges.
