Leo: “hay que tocarme muy flojito o me hago una herida” | Piel de Mariposa

🔎 Try June’s Journey for free on iOS, Android, or PC: https://woo.ga/oludsain (ad) ➡️ Donate to the DEBRA Association and help reduce minutes of pain: https://pieldemariposa.es/haz-una-don... The sponsorship of this episode has been fully donated to the DEBRA Butterfly Skin Association. Thank you to June's Journey for their support. Today we interview Leo Gutiérrez, a 12-year-old boy from Seville with one of the bravest voices in the country. Leo lives with epidermolysis bullosa, the disease known as "butterfly skin," a rare condition that makes his skin so fragile that a simple touch can cause a wound. But this isn't a story about what a disease takes away, but about what a child is capable of achieving: Leo took his case to the European Parliament and succeeded in getting Andalusia to become the first region in Spain to fund the treatment that could change his life. In this interview, Leo tells us about his daily life, what he felt when he received his first dose after waiting so long, and why his fight won't end until this treatment reaches everyone who needs it in Spain. But he also talks about other things: his cat, video games, his accent, his mother (his "guardian angel"), and his dream of becoming a journalist. A conversation about fragility and strength, about pain and hope, and about how a single voice, when it dares to rise up, can reach much further than we imagine. ► Links of interest: Book Club: https://leertienesentido.club/ Tiene Sentido WhatsApp Community: https://azimutlife.co/pages/comunidad... Our online store: https://azimutlife.co/ Training for your well-being: https://clubdelbienestar.com/ ► Want to know more about Leo? DEBRA Butterfly Skin Association: https://pieldemariposa.es/ Instagram:   / lidiaosoriovazquez   ► It Makes Sense Podcast is also on... Spotify: https://open.spotify.com/show/0HtxMCd... Instagram:   / tienesentidopodcast   TikTok:   / tienesentidopodcast   Contact: [email protected] ► Episodes 0:00 - Intro 02:53 – Progress with the treatment 04:00 – Leo's vocation 05:00 – How Leo manages his schedule 07:05 – Leo's hobbies 09:44 – His daily life at school and his favorite subjects 12:44 – His dream of being Journalist 15:13 – The journalism he likes and his role models 18:02 – How does Leo handle fame and virality? 20:40 – Explaining Epidermolysis Bullosa (EB) to those unfamiliar with it 21:20 – The journey to obtaining medication in Spain 23:48 – The moment he received the news and his mother's reaction 27:03 – Details of the treatment and care 31:22 – Life at home: cooking, his favorite dish, and living together 35:25 – The story of his cat, "Esponjita" (Little Sponge) 42:24 – The bond with his mother 45:00 – Passion for Sevilla FC and pride in being Andalusian 52:30 – A message to politicians 53:30 – Lidia's (his mother's) account of his birth and diagnosis. 01:02:35 – Surprises and gifts for Leo 01:06:40 – Goodbye Episode sponsored by June's Journey.