Cynwyd Elementary School recently played host to the sixth annual "Cal's Cupcake Challenge" benefiting The Calliope Joy Foundation and the Leukodystrophy Center of Excellence at the Children's Hospital of Philadelphia as hundreds of students, parents, staff and community members gathered to enjoy a fun-filled day for a great cause.
This year's event featured arts & crafts, a children's cupcake baking competition, face painting, rides, prizes, delicious food and 5,000 cupcakes donated from a dozen of Philadelphia's finest bakeries.
"This is so much bigger than our family now," said Maria Kefalas, co-founder of The Calliope Joy Foundation. "This is about what happens after Cal to make sure other children get a very different ending for their stories. We have witnessed the future in these miraculous new gene therapies that promise to do more to stop the disease and give children back their childhoods."
Calliope Joy Carr - nicknamed Cal - is the youngest child of Cynwyd parents Pat Carr and Maria Kefalas. Cal was diagnosed with late-infantile onset metachromatic leukodystrophy (MLD) at age 2 in 2012. Leukodystrophies are a group of disorders that affect the white matter of the brain. Children with leukodystrophies are born healthy but start regressing, losing the ability to crawl, walk, speak, eat, smile and laugh. Although leukodystrophies do not currently have cures, if detected in the newborn period, a stem cell transplant may be a therapeutic option for some patients. Early detection also allows for preventative care strategies to improve quality of life for children and their families. There are more than 60 forms of the disease and 1 in 5,000 are affected.
Cal is now eight years old and lives with her family in Bala Cynwyd. She receives hospice care through the Kind Pediatric Hospice Unit and laughs and smiles every day. In 2013, Cal's family started fundraising by selling cupcakes because they wanted to help children with leukodystrophy. Since that time, "cupcake celebrations" throughout the area have sold more than 30,000 cupcakes and raised more than $450,000 to establish the nation's first Leukodystrophy Center of Excellence at the world-renowned Children's Hospital of Philadelphia. For more information about The Calliope Joy Foundation, click here.