If a hospital fails to identify symptoms of a debilitating disease in infants it could spell disaster for patients as they grow up. In her story “Doomed by Delay,” Chicago Tribune investigative journalist Patricia Callahan describes the struggles of parents of children with Krabbe disease who weren’t properly diagnosed until it was too late to salvage their motor functions. Callahan is the 1st place co-winner, along with Michael J. Berens, of the NCDJ’s 2017 Katherine Schneider Award for Disability Journalism.
In a related report, Chicago Tribune photographer Brian Cassella interviews the mother and caretaker of a 6-year-old living with Krabbe disease.
An article from The Baltimore Sun says The Kennedy Krieger Institute, a research facility focusing on pediatric developmental disabilities, has a therapeutic program that teaches patients with paralysis how to scuba dive. One therapist even theorizes that the pressure of deep water affects how nitrogen is circulated through patients’ tissues and improves their sensitivity.
NY Times reports Hideto Kijima, a disabled rights activist who is partly paralyzed, said he was told by staff of a Japanese airline that he could not board because the small plane was not wheel-chair accessible. The episode has drawn significant public attention and the airline, Vanilla Air, has since apologized. Read more.
Ecuador’s presidential front-runner Lenín Moreno, who is paraplegic, has connected with other people with disabilities, energizing the group who feel that they have been “ostracized for generations.” Read more
A New York Times columnist details what living with paralysis involves physically: a workout that begins at 4:30 a.m.. Read more