When her baby started struggling to breathe, Stella Praveen had a terrible feeling that something was gravely wrong with her 14-month-old daughter, Ellen.
She ran barefoot to a nearby clinic, but the doctors there said the child needed to see a specialist right away. Without an ambulance, she jumped on the back of a motorcycle and rode 35 miles to a children’s hospital in another town, where Ellen remained in intensive care for 12 days.
Two weeks later, Praveen learned that her daughter, who had never been able to lift her neck nor roll over, was suffering from spinal muscular atrophy, a rare condition often fatal by age 2.