3. Hayley Okines – “Old Before My Time” Author and Advocate
From the UK, Hayley Okines became one of the most recognized voices for progeria awareness worldwide. Diagnosed as a toddler and given little chance of living beyond 13, she defied the odds and reached 17, using those extra years to reshape public understanding of her condition. Nicknamed the “100-year-old teenager,” she appeared in documentaries that candidly portrayed both the hardships and joys of life with progeria, and she co-authored the book Old Before My Time, which touched readers across the globe. Traveling abroad for experimental treatments, including trials in the U.S., Hayley helped advance scientific knowledge while continuing to focus on friends, family, and advocacy. When she passed away in 2015, tributes poured in worldwide, honoring her courage and her contribution to greater awareness and compassion for children with rare diseases.