St. Joe’s professor writes about the grief of raising a daughter destined to die

Once, Maria Kefalas naively assumed that raising her children on the Main Line, surrounded by beautiful homes and great schools, would keep tragedy and suffering at bay.

“Now I could see the absurdity of such thinking,” writes Kefalas, 53, a nationally renowned St. Joseph’s University sociologist in her new book released this week, Harnessing Grief: A Mother’s Quest for Meaning and Miracles (Beacon Press, 2021).

Crushed by the knowledge that her daughter would someday die of a rare genetic disease, and laid low by her husband’s blood-cancer diagnosis, Kefalas’s life was hijacked by misery and profound grief.

She grew to despise her neighbors for having healthy children and husbands. Kefalas derived “thrilling power” in weaponizing her tragedy, making people recoil as she described details of how her daughter, Calliope Joy, was going blind and becoming paralyzed at the same time that her husband, Patrick Carr, was fighting Stage IV multiple myeloma.

Why, she wondered, were parents whose kids had pediatric cancer complaining? “Only 20% die,” she’d coldly think. Late at night, in “deranged agony,” she’d stalk her Bala Cynwyd neighborhood, an overweight, unkempt madwoman cursing the perfect people sleeping in their perfect houses, blessedly ignorant of the 24-hour horror she lived.

Any book with so relentless a narrative would ultimately seem like an assault if not for Kefalas’ humanity and desire to find meaning among all the broken pieces.

» READ MORE: Bala Cynwyd woman accepts terminal diagnosis of daughter with grace

While Carr, a Rutgers University sociologist, died last year at age 53, Cal, as she’s called, is now 11, having defied science by living years longer than anyone said she would.

And, finding a way to “harness grief as a superpower,” Kefalas has used a stunning breakthrough in the treatment of Cal’s disease, metachromatic leukodystrophy (MLD), to help other children. She’s also credited with being an inspiration for, and an investor in, a center at Children’s Hospital of Philadelphia that works with patients suffering genetic diseases.

“The story is the resiliency Maria has shown through all these tragic events in her life,” said Amy Waldman, a pediatric neurologist and medical director of CHOP’s Leukodystrophy Center of Excellence. “She literally changed CHOP, changed so many children’s lives, changed the world, really.

“The most selfless thing you can do is save other children’s lives when you can’t save your own child’s. Instead of retreating, Maria is moving forward.”

The Grief book is Kefalas’ fourth. She’s also written about unwed mothers, the so-called rural brain drain, and working-class heroes in Chicago.

Born in Lexington, Mass., she’s an expert on poverty, violence, marriage, and the American family. In 2009 at age 42, she had her third child, Calliope, named for the muse of epic poetry and eloquence in Greek mythology.

Kefalas jokes that after teen girls, the second-largest group of women with unplanned pregnancies is 40-year-old women. The same week she learned she was pregnant with Cal, she was scheduled to give a talk entitled, “Unplanned Parenthood.”

With Cal and their other two kids, PJ, now 16, and Camille, now 20, Kefalas and Carr were living a “perfect” life, Kefalas writes.

It changed quickly.

Kefalas and Carr saw that, starting at age 2, Cal was starting to regress; the disease began reversing every childhood milestone she had achieved — speaking, walking, feeding herself.

The doctors were blunt: “It’s fatal, and we have no treatment or cure.”

In an interview, Kefalas said, “Mothering a child who will never grow up is quite a learning experience. We got rid of her bike and all the toys she’ll never play with.”

People born with MLD lack an enzyme in their blood called arylsulfatase. Without it, the development of the myelin sheath — the fatty covering that acts as an insulator around nerve fibers — is impaired. Lack of a sheath leads to a breakdown in communication between the nerves and the brain and brings on paralysis, blindness, and death.

Just 3,600 children a year are diagnosed throughout the world, Kefalas says in her book. No one with MLD has lived beyond 13.

Kefalas began writing blogs after the diagnosis. “They were almost unreadable” because of their sheer rawness.

Nevertheless, in 2013, she signed a contract to write the book, assuming the story would end with Cal’s death.

That idea would change after Kefalas met Liz Scott, the mother of Alexandra, founder of the Alex’s Lemonade Stand Foundation, a now-famous pediatric cancer charity. Alex died at age 8 in Wynnewood in 2004 after raising more than $1 million for other suffering children.

“The only way to save yourself from grief,” Kefalas concluded after meeting Scott, “is to help others.” With that epiphany, Kefalas knew that her book wouldn’t just be about herself and her pain anymore.

Kefalas and her family started the Calliope Joy Foundation and lit on the idea of raising funds by having children bake cupcakes that were judged by professional bakers. But where would the money go?

Reenter Waldman, who’d read about a major breakthrough in Milan in which doctors appeared to be slowing the full manifestation of MLD — not in children already showing signs of the disease, but in their younger siblings who had the genetic predisposition to develop MLD, but hadn’t yet displayed symptoms.

“That’s what you should do with the money,” Waldman told Kefalas. “Pay people’s way to the clinical trials in Milan.”

Kefalas did, and several children began receiving gene therapy that seems to be forestalling the advance of MLD. Children who should have been dead are living lives beyond doctors’ predictions.

“We cannot save Cal,” Kefalas writes, “but we will get to see a different ending to other children’s stories.”

Waldman and her colleagues were inspired by Cal and others to create the leukodystrophy center, which supports families dealing with genetic diseases. The Calliope Joy Foundation, which has sold 50,000 cupcakes and raised around $900,000, was one of the initial investors in the center, Waldman said.

“The Milan therapy is quite promising, but it’s not a cure, and it doesn’t reverse every symptom,” she added. “But these are life-altering therapies we’re seeing. So many have been influenced by the sheer generosity of Maria, who’s suffered so much.”

For her part, Kefalas said she’s started to take care of herself. “I’ve lost weight and eat like a Main Line lady now — kale smoothies and turkey burgers.”

And she said although she knows Cal will die young, she has promised friends and family that she will persevere after her daughter is gone.

“I’ve had my nervous breakdown,” she said. “That’s done. I told Pat before he died, no matter what, I’m going to be OK.”

Maria Kefalas will discuss her book at a virtual Free Library of Philadelphia event at 7:30 p.m., Feb. 16.