My mother’s love and resilience helped my sister through a rare condition. But every step in her 17-year life was a fight with health insurersMy sister had a condition called “aromatic L-amino acid decarboxylase deficiency”.Mouthful, right? It’s also exceedingly rare: something like seven other children had been diagnosed with it back when she finally got the diagnosis at age 12. The condition is so unusual that no pharmaceutical company would ever invest in studying it. Continue reading...