Nathanael Blue was born healthy in 2005. However, during his first week of life, his jaundice was tragically mismanaged by both his pediatrician and hospital. This oversight led to an irreversible brain injury called
k e r n i c t e r u s .
Kernicterus brings with it a cascade of secondary diagnoses, including athetoid cerebral palsy, dystonia, auditory neuropathy, and many others. Despite these endless challenges, Blue’s radiant smile and indomitable spirit always shone through.
A Hero’s Heart
Blue had a deep love for hero stories and embodied the qualities of a true hero himself. His spirit was unyielding, and he cared deeply for his friends with disabilities, many of whom also lived with kernicterus. He had a special compassion for babies at risk of the condition, advocating for their well-being whenever he could.
Blue was painfully aware of how often kernicterus was overlooked or dismissed. Through his experiences, he witnessed firsthand the resistance to acknowledging its continued prevalence, a truth that fueled his passion for awareness and change.
Embracing Life’s Joys
Despite his disabilities, Blue embraced life fully. He found joy in every moment, living with a resilience that inspired everyone around him. His health remained stable until 2018, when his deep brain stimulator became infected. The subsequent removal and complications from the infection triggered a cascade of health challenges that ultimately took his life in 2023.
A Legacy of Hope
In his final moments, Blue made a decision that would continue his fight for others: he chose to donate his brain for kernicterus research. This selfless act has opened new doors in the understanding and study of kernicterus, paving the way for advancements in prevention and treatment for those living with kernicterus.
Blue’s life, though marked by challenges, was a beacon of hope, courage, and love. His legacy continues to inspire those working to end kernicterus and create better futures for those affected.
