Living with a rare condition can feel isolating, but some people manage to transform their struggles into legacies that inspire the world. Sammy Basso, Adalia Rose Williams, and Hayley Okines all lived with Hutchinson–Gilford Progeria Syndrome (HGPS), an ultra-rare disorder that accelerates aging in children. While most people with progeria face drastically shortened lifespans, these three figures left behind stories far greater than their diagnoses—stories of courage, creativity, and resilience that continue to resonate worldwide.
1. Sammy Basso – Italian Advocate and Scientist
Sammy Basso, born in Vicenza, Italy, became internationally known as one of the longest-living people with progeria, far surpassing the average life expectancy of 13 years. Diagnosed at a young age, he chose not to retreat from the world but to step onto the public stage, sharing his story with humor and optimism through Italian television appearances and public events. His passion for science led him to study natural sciences at university, earn a degree in biology, and even collaborate with researchers on the biology of aging, giving him a rare dual perspective as both patient and scientist. In addition, he co-founded the Associazione Italiana Progeria Sammy Basso Onlus, which supports families and funds vital research. Sammy continued for his whole life to inspire others, proving that even with limitations, one can live fully, contribute meaningfully, and leave a lasting impact.