EditorialSuhellen Oliveira Da Silva, whose children both have the rare genetic disorder spinal muscular atrophy (SMA), holds 2-year-old Levi while a nurse tends to her older son Lorenzo, 10, in a bedroom at their home on the outskirts of Recife, Brazil, June, 4, 2022. (Dado Galdieri/The New York Times)
EditorialKhyati Nagumantri, who has Type 1 spinal muscular atrophy, is fed through a tube with the assistance of her mother at home in Bangalore, India, on Feb. 16, 2022. (Sara Hylton/The New York Times)
EditorialChloe Mead and Andy Maskin tend to their seven-year-old son, Henry, who lives with a rare condition called spinal muscular atrophy that requires 24-hour medical care, at their home in Queens on May 9, 2021. (Brittainy Newman/The New York Times)