Boy with 'butterfly skin' urges EU Parliament for faster Vyjuvek access in Spain
A 12-year-old from Seville with epidermolysis bullosa delivered a moving speech at the European Parliament, calling for approval of the.
Key Points
- Leo, 12, from Seville, has epidermolysis bullosa causing extreme skin fragility.
- Daily routine includes over an hour of painful dressings and assistance for tasks.
- Speech demands approval of Vyjuvek therapy for wound healing in Spain.
- Andalusian government to cover Vyjuvek costs for local patients post-speech.
A 12-year-old boy from Seville suffering from epidermolysis bullosa—known as butterfly skin—delivered a moving speech at the European Parliament, urging politicians to speed up access in Spain to a treatment already available elsewhere.
Leo described the daily agony of his rare condition, which causes extreme skin fragility. He explained how each morning starts with painful dressings that last over an hour, and how he requires assistance for many routine tasks. In his address, he specifically called for approval of Vyjuvek, a therapy that aids wound healing in patients with the disease.
The boy's emotional plea ended with a direct appeal to lawmakers to take action and improve lives for those affected. The speech quickly gained global attention, prompting the Andalusian regional government to announce it would cover the cost of the treatment for patients in the area.
Original Sources
This article was aggregated from the following Catalan-language sources: