💙 Sixteen-year-old Emiliano, a 16 year old, from Guatemala was first thought to have a simple fracture after a karate injury. But when further tests revealed his bone was unusually thin, he was eventually diagnosed with Gorham-Stout disease (GSD)—a rare condition that weakens bones. After surgery and physical therapy, Emiliano recently started sirolimus treatment and is bravely adjusting to the side effects. His mum, Ale, shared: 👉 “Emiliano remains in good spirits and has a remarkably positive attitude toward all the tests and effects. That gives me a lot of strength—it’s difficult to be a mother going through all of this, but my son has made it easier with his resilience." "I truly hope that sharing our experience brings comfort to anyone else going through something similar. The LGDA helped me process all the news and results after learning about GSD; it helped me cope. It was very hard to find out what the diagnosis was. At first we were told it was cancer." We are so grateful to Emiliano and Ale for sharing their story with the LGDA, and to Shriners Children’s Hospital for highlighting his journey. Stories like theirs help raise awareness and bring comfort to others facing similar challenges. 💪💙 📖 Read Emiliano’s full story here: 🔗 https://ow.ly/Orlr50WQtZs #GorhamStoutDisease #RareDisease #Resilience #ShrinersChildrens #LymphaticMalformations Shriners Children's (fb)

🌍 Today is International Day of Charity – a day to celebrate the power of giving! 💛 Originally a Hungarian civil society initiative to honor Mother Teresa on the anniversary of her passing, September 5 became a worldwide platform for charitable action when the UN declared it an international holiday in 2012. Mother Teresa’s legacy reminds us that even small acts of charity can make a lasting impact, alleviating suffering and creating more inclusive, resilient communities. At LGDA, patient voices guide our work – from connecting families with peers and care networks, to advancing research and educating the medical community. Together, we help and support patients with complex lymphatic anomalies (CLAs) and lymphatic malformations 💜 There are many ways to get involved this International Day of Charity: ✨ Volunteer your time ✨ Make a donation to support our work - https://bit.ly/40oPlmO Every action, big or small, creates hope and makes a real difference. Check out our website to find out how to get involved - www.lgdalliance.org .💖 #InternationalDayOfCharity #LGDA #ComplexLymphaticAnomalies #LymphaticMalformations #GiveHope #PatientVoicesMatter (fb)