Bala Cynwyd woman accepts terminal diagnosis of daughter with grace

You know you're in trouble, Maria Kefalas said sadly, when you're fast-tracked for the Make-a-Wish Foundation.

Kefalas, 45, is a St. Joseph's University sociologist whose daughter Calliope, 3, has a rare and untreatable genetic disease, MLD. It's a diagnosis without hope: Most patients don't live beyond age 5.

Kefalas, along with her husband, Patrick Carr (also a sociologist), and their three children were sponsored for a trip to Martha's Vineyard over the summer by the foundation, which attempts to enrich the lives of children with life-threatening medical conditions.

Calliope - called Cal - loves the ocean, and the family took the trip soon after she was diagnosed.

In Greek mythology, Calliope is the muse of epic poetry and eloquence. In Bala Cynwyd, Calliope is becoming known among neighbors and her parents' friends as a child facing her fate with quiet grace.

A nationally recognized expert on the American family, Kefalas is being compelled by her daughter's illness to contemplate aspects of motherhood she never before imagined.

"Mothering a child who will never grow up is quite a learning experience," Kefalas said. The disease has reversed every childhood milestone Cal had achieved - speaking, walking, feeding herself. "We got rid of her bike and all the toys she'll never play with.

"How I miss chasing after a 3-year-old."

Author of several books, Kefalas is director of the Richard Johnson Center for Anti-Violence, which researches youth, domestic, and intimate violence as well as violence in schools.

She uses her writing to release her pain.

She "screams" daily into a blog about Cal called the Joy Project (calliopestory.blogspot.com/), which has 80,000 page views. Joy is Cal's middle name.

"Cal has showed me how pain and love and suffering and joy must coexist," Kefalas writes. She adds, "When I see my friends with healthy children, I just savor how beautiful and healthy they are. I hope I . . . never . . . follow up a friend's story about a baby's first step . . . with me recounting what the hospice nurse said this week."

Faced with grief of overwhelming power, Kefalas had the choice of crashing into despair or "harnessing this ugly beast and leading it to something more beautiful," said her pastor, the Rev. Christ Kontos of St. Luke Greek Orthodox Church in Broomall.

That beauty, Kontos said, is the Calliope Joy Foundation. Unlike most foundations dedicated to a disease, Calliope Joy isn't looking for a cure.

"Cal's disease is so rare, there's no sense working on it," said Kefalas. "One person in 275,000 gets it. A cure is 20 years off."

Instead, the foundation has three aims: To create a mural for a rooftop garden at Children's Hospital of Philadelphia, where Cal has had therapy; to fund fellowships for doctors who study neurology; and to raise money for Children's Hospital and St. Christopher's Hospital for Children to pay for pediatric braces, bath chairs, and other equipment.

"With grief, you have to go crazy," Kefalas said. "The question is, what do you do with your crazy? The foundation gives us a purpose. I'm going to have something that honors her. That's the only consolation I have."

People born with MLD, or metachromatic leukodystrophy, lack an enzyme in their blood called arylsulfatase A. Without it, the development of the myelin sheath - the fatty covering that acts as an insulator around nerve fibers - is impaired, according to the National Institute of Neurological Disorders and Stroke. Lack of a sheath leads to a breakdown in communication between the nerves and the brain. It brings on paralysis, blindness, and death, according to the MLD Foundation.

Since the diagnosis, Kefalas said, she has become obsessed with "creating beauty."

That's the instruction she gives Perky Edgerton, the Swarthmore artist whom the Joy Foundation commissioned to make a 15-by-15-foot mural of mosaic tiles at Children's Hospital. The cost is $30,000.

"Maria keeps saying this has to be impossibly beautiful," Edgerton said. "I want it to be something kids . . . can disappear into for a while."

The piece will depict an undersea garden with a mermaid who represents Cal. When she had water therapy at Children's, Cal was known as "the mermaid."

"I so want Maria to be happy," Edgerton said. "I want to fill her need."

All the people who know Kefalas and Carr, who teaches at Rutgers University in New Brunswick, say things like that. The family has been inundated with love, checks, and casseroles.

Throughout her illness, Cal has lived at home, under nursing care.

People at St. Luke were inspired to help her by contributing $12,000 of labor to rebuild the family's bathroom to accommodate Cal, Kontos said.

Meanwhile, church women were sending several refrigerators' worth of meals to the house. A grateful but overwhelmed Maria Kefalas asked Kontos's wife, Michele, to slow down, but Michele smiled, saying, "You can't tell Greek women to stop cooking."

At the same time, Kaila Conti, the 22-year-old daughter of Kefalas's hair stylist in Wynnewood, held a fund-raiser that brought in $2,200 to help start the foundation. Former students of Kefalas and Carr's did the paperwork to make the Joy Foundation viable. A carnival and 5K run are planned for the fall.

Throughout her slow-motion nightmare, Kefalas has worked to shield her son, P.J., 9, and other daughter, Camille, 13. But the children understand.

"So," Kefalas said, "I tell my kids that Cally is perfect and will never hurt anybody and never be cruel. All she wants is love and all she gives is love."

In the end, Kefalas added, "I have to show my children how to move on."