Calliope Joy Carr, indomitable and inspirational daughter and sister, dies at 12

Calliope Joy Carr, 12, of Bala Cynwyd, a daughter and sister who lived with a rare degenerative genetic disease and inspired her parents, brother, sister, and countless others to make life better for children like her, died Thursday, March 24, of metachromatic leukodystrophy at home.

Calliope, known to family and friends as Cal, was diagnosed with late-infantile onset MLD when she was 2 and eventually became unable to walk, eat, talk, and see. Most children with her condition die before they are 5, according to the MLD Foundation. Cal celebrated her 12th birthday on Dec. 23.

“She was independent and bright and ran her own life,” said her mother, Maria Kefalas. “She did things on her terms. She had an incredibly strong personality.”

Cal spent the last eight years of her life in hospice care at home, and her family and caregivers marveled at her perseverance and joyful existence. Despite the ever-present challenges, she smiled and laughed often and sang so loudly when she could that her voice echoed throughout the house.

Like all kids, she had her favorite movies and TV shows and, like all kids, playfully shook her fist or gave a side-eye if you were slow to start the video or change the channel. She giggled when older brother PJ got into trouble, liked to have her hair and nails done by older sister Camille, and they called her the little mermaid during her water therapy sessions.

She was aware of life around her and could recognize her family by the sound of their steps as they approached. She especially liked to snuggle in the early afternoons, sometimes with her favorite dolls and stuffed animals but mostly with family and friends, and those who curled up with her said they could literally feel her warmth and humanity.

“Her smile made my heart sing,” one of her caregivers said in an online tribute. Another friend said: “She had a million smiles, and each was brighter than the previous.”

Cal spent thousands of hours in the arms and on the lap of her father, Patrick Carr. The last word she spoke before losing her speech in 2012 was Daddy, and she was visibly distraught when he died in 2020. “She mourned him,” said her mother.

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Born Dec. 23, 2009, Cal showed symptoms of her disease when she was 2, and PJ suggested selling cupcakes to raise money for research into a cure. So PJ, Camille, and their parents held a local bake sale that grew into the nonprofit Calliope Joy Foundation.

Since 2013, the foundation has sold more than 43,000 cupcakes and raised nearly a million dollars to increase awareness of MLD and other rare diseases and support families who grapple with them.

“Even to people like me, who had never met her, it was an honor and a privilege to have watched her story unfold,” a person said in an online tribute.

Her mother said: “It astounds me how much she meant to people. I’m overwhelmed how she made such a difference.”

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Cal’s mother has received condolences from people around the world — doctors, researchers, and those going through similar experiences — and the connections sustain her. “She never hurt anyone,” her mother said. “Who can say that? She was so happy to be around people who loved life.”

A friend wrote in a tribute: “What an inspiration she has been in her life and what an incredible legacy she leaves.” One of her caregivers said: ”Her love of snuggles, her sweetness, laughter, and smiles, that’s what I will always remember.”

Her mother said: “There was something divine in her.”

In addition to her mother, brother, and sister, Cal is survived by other relatives.

A celebration of her life was held Thursday, March 31.

Donations in her name may be made to the Calliope Joy Foundation, PO Box 2866, Bala Cynwyd, Pa. 19004.