Giuliano's Fight: Swiss Boy's Rare Disease Journey Inspires New Care Measures
Giuliano, a four-year-old boy from Switzerland, is battling Ullrich muscular dystrophy, a rare disease that affects his muscles, including those crucial for breathing. His parents provide round-the-clock care, ensuring he gets the best possible support.
Giuliano's parents ensure he's comfortable and safe throughout the night by repositioning him and using a sensor to monitor his breathing. Proper fitting of his breathing mask has significantly improved his sleep and overall health. The Lung League has been a beacon of support for the family, providing devices, knowledge, and reassurance for over a year.
Giuliano's daily life includes an evening ritual of inhaling and being repositioned to prevent muscle suffering. His older brother Diego remains close, maintaining a normal sibling bond despite the illness. Meanwhile, the Swiss Federal Council is discussing a new legal basis to enhance care for people like Giuliano. This includes plans for a national registry and sustainable financing for information and advisory services. Around 650,000 people in Switzerland live with a rare disease, many of which begin in childhood and are genetically caused.
Giuliano's family receives constant support from the Lung League, while the Swiss government considers new measures to improve care for people with rare diseases. Despite the challenges, Giuliano's family remains resilient, with his older brother Diego standing by his side.
