Calliope Joy Carr defied all odds by living with rare genetic disease for 12 years (Bala Cynwyd, PA) — Calliope ‘Cal’ Joy Carr, 12, who inspired a global movement to raise awareness of and funding for rare diseases, passed away on Thursday, March 24, 2022, surrounded by her family at her home in Bala Cynwyd, PA. Cal was diagnosed with late-infantile onset metachromatic leukodystrophy (MLD), a rare degenerative genetic disease, at the age of two. She lost the ability to walk,