Growing up in the Faroe Islands in the North Atlantic, Edmund Jensen battled an overpowering sense of fatigue. At age 10, he developed seizures in which his limbs would stiffen and his eyes would roll back in his head, but local doctors could never diagnose his condition. In August 2008, Danish doctors identified the genetic defect that prevented his body from maintaining adequate levels of carnitine, which plays a critical role in metabolism. By then, Jensen was 21, had close-cropped brown hair and a silver hoop through his upper ear.
The day before he went to get his first prescription, he died of cardiac arrest. “Again and again, I look at his picture and cannot believe that it is true,” his father, John, wrote afterward.
