My baby’s new prognosis: ‘She will not die’… but what will her life be like and how should I live mine?
When Bina Shah’s daughter was diagnosed with a rare chromosomal disorder, Bina was inspired to found Project 8p. She desperately wanted answers to the questions that went beyond the fundamental question of why her daughter was the way she was. The most recent prognosis for her daughter—that “she will not die”—did little to resolve these questions and betrayed the memory of those 8p heroes who have lost their lives. Does she face a life without joy, without health… without meaning? Will Bina outlive her daughter and not be there for her?…
