Andalusian preteen with butterfly skin wins over European parliament

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.

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.

"I'm here today because I want you to listen to me, not just as politicians, but as people," he began. "I'm going to tell you about my daily life with this disease. My day starts at seven in the morning with a very painful treatment that lasts an hour. While other children are waking up, getting dressed and having breakfast, I'm already battling the pain."

Leo also spoke of the wounds that have to be cleaned daily, of the difficulty of dressing himself or even the sores that make something as simple as eating incredibly difficult for him. "For me, these are huge daily challenges."

"When I have to shower, it's another challenge to overcome: a nearly four-hour ordeal where I see my naked body, covered in wounds, and my mind keeps racing, wondering why I'm still like this". He also confessed to living in constant fear of getting another wound. Always another one. That is why, when he's invited to a birthday party, while his friends run, jump and eat cake, he admits he's afraid to play because even a slight bump could hurt him badly.

"There are many of us children and adults who live like this every day....and, although we're strong, we're tired of the constant pain. A pain that burns, that stings and never completely goes away." To conclude, Leo asked for the same opportunity as other European children who are already benefiting from the new drug. "If my skin were yours for just one day, I know you would do everything to change things. Please, help us live without fear," he implored those present.

His mother, Lidia, who accompanies him on a daily basis and who is his best ally in the fight against the disease, is looking forward to finally seeing the results of the long-awaited medication. "We thought it was a long way off, but now it's here," she said with a smile.