My name was Charles Gard, but everyone called me Charlie. I was eleven months old when my parents decided to end a contentious legal fight and allow me to die. I was born in West London on August 4, 2016. My dad, Chris, is a postman and my mom’s name is Connie. They are still young, only in their thirties. At birth, I seemed to be developing normally, but by October, it was apparent that I was not gaining weight. I was then admitted to the neonatal intensive care unit at London’s Great Ormond Street Hospital, one of the world’s leading children’s hospitals, and treated for encephalomyopathic mitochondrial DNA depletion syndrome, a rare genetic condition which prevents cells from producing sufficient energy to maintain normal bodily functions. Experts on my form of MDDS, called RRM2B, unanimously agreed that there was no cure or treatment. At the time of my death on July 27, 2017, it was thought that only sixteen children globally have this condition.
130 Inspiring the future generation in Paediatrics during the pandemic – Great Ormond Street Hospital Summer School 2020
