Those afflicted by rare diseases encounter shortage of medical care, support, few research funds
Three children. Three distinct diagnoses. One common dilemma.
Allie Barone, 11, of Clinton, feels better when she sees other kids with Chiari malformation, a structural defect that affects the brain’s cerebellum, at an annual fundraising walk.
“To see somebody else with a neck brace is like the coolest thing,” said her mother, Stephanie Marquez. Allie's father, Robert Barone, lives in Rome.