Andalusian preteen with butterfly skin wins over European parliament

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Leo, a 12-year-old from Seville, brought home to MEPs what it means to live with his skin condition: epidermolysis bullosa (EB). There, he called on the politicians to support public funding for a drug that the Junta has now committed to purchase: "We're going to be free of this pain"

Rossel Aparicio

Malaga

Tuesday, 17 March 2026 | Updated 18/03/2026 11:31h.

His courage and tenacity have managed to break down the walls of public healthcare bureaucracy. We're talking about Leo Gutiérrez, a 12-year-old boy from Seville with butterfly skin disease (epidermolysis bullosa - EB for short), a rare, incurable skin condition that causes extreme fragility in the skin of those who suffer from it.

He has played a key role in the giant step forward announced this past week by Andalucía's regional government to improve the quality of life for EB patients across the region.

This preteen, who possesses a special magnetism that captivates and touches the heart of anyone who listens to him, gave voice to the disease in the European Parliament earlier this month in a heartrending speech that went viral on social media.

"I dream of being able to live without so much pain. I dream of being able to play without fear and of being able to just be a child," he said in his address to the attending MEPs. His speech had the clear intention of speeding up the arrival in Spain of the pioneering drug treatment for EB called Vyjuvek. Juanma Moreno, as Junta president, has pledged to fund this treatment for a total of 45 patients with this condition in Andalucía.

"This is going to change the lives of all those affected by this disease. It's going to be a profound change: it will free us from this pain," the young boy from Seville explained to the media after his meeting with Juanma Moreno in Seville last Thursday.

A heartrending speech

The video of his European speech that went viral is barely four minutes long, but he nailed it. He didn't need more time to deeply move his listeners and stir their consciences.

Leo shared his personal story to raise awareness of what it means to live with such extremely fragile skin. His childhood, he explained, is defined by this skin condition, which causes any contact to result in lesions all over his body, requiring him to undergo painful daily treatments.

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