“Harnessing Grief”

It’s impossible to describe the grief that MARIA KEFALAS and her family has suffered in the years since their youngest daughter Calliope Joy was diagnosed with a degenerative genetic disease, MLD (metachromatic leukodystrophy). But as Kefalas describes in her new memoir, Harnessing Grief: One Mother’s Quest for Meaning and Miracles, she used that pain to energize her search for novel treatments, to organize a global community of other families with children inflicted with MLD, and to push and support the science on this orphan disease. This hour, Maria Kefalas, a professor of sociology at Saint Joseph’s University, joins us to talk about parenting a terminally ill child, the work of holding her family together under such extraordinary circumstances, including the death last year of her husband Pat Carr, and what she’s learned about herself and life in the process.