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 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, eat and talk, but never stopped laughing and smiling.
Doctors originally told the Kefalas-Carr family that it was likely that Calliope would not live beyond the age of six. However, this past December, Cal defied all scientific odds and celebrated her 12th birthday. She joined the five percent of children with her disease who live to the age of 10.
Upon learning of Cal’s diagnosis, her brother had the idea to sell cupcakes to help raise money for doctors researching a cure for “Cal’s disease.” What started off as a local bake sale grew into The Calliope Joy Foundation (CJF) – a non-profit started in Cal’s honor to help support other children with leukodystrophy and their families.
Since 2013, The Calliope Joy Foundation has sold over 45,000 cupcakes and raised nearly a million dollars through annual events. In addition to directly helping families, the foundation helped establish the nation’s first Leukodystrophy Center of Excellence at the world-renowned Children’s Hospital of Philadelphia.
Thanks in part to the advocacy and fundraising by organizations like CJF, children with MLD now have access to gene therapy treatment that can cure the rare disease. The expensive therapy was only available in Milano, Italy, until this past year when the first domestic treatment was performed on a four-year-old girl at the University of Minnesota Masonic Children’s Hospital in Minnesota.
“We understood that our daughter Cal would not benefit from the work we do,” said Maria, “but we are grateful for playing a small role in changing what it means to have leukodystrophy and offering hope to the families who follow us.
“The promise of gene therapy to cure Cal’s disease has given us a front-row seat to the biggest medical breakthrough in a generation.”
In addition to her mother, Calliope is survived by her brother, P.J. Carr, and her sister, Camille Carr. Her father, Patrick Carr, died in 2020.
The service will be held on Thursday, March 31 at the Annunciation Greek Orthodox Church in Elkins Park, PA. In lieu of flowers, donations can be made to the Calliope Joy Foundation to help kids just like Cal see another day. Visit https://www.classy.org/campaign/in-memory-of-calliope-joy/c399049