Boston Children’s Hospital’s Director of Epilepsy, Dr Philip Pearl, invited me to join him in speaking at the Partners Against Mortality in Epilepsy (PAME), in conjunction with the American Epilepsy Society’s annual conference in December 2024. By sharing my family’s story, I am shining a light on the often-overlooked ultra-rare disease community while raising awareness to remove antiquated stigmas, promote education both intellectually and emotionally, and inspire research to ensure loved ones remain within our embrace.