Carmen Crilly was dancing with her mother to Feist’s “1234” when she died. A beautiful, squirrel-cheeked baby with outrageously long eyelashes and a belly laugh that carried on and on, Carmen was born with a degenerative brain disease. At 10 months, she was unresponsive and having difficulty breathing. Her parents, Catherine and Bill Crilly, gathered their older children, Ella, who was almost four, and two-year-old Mick, and began dancing in the kitchen to the kids’ favourite song. “I held her head against my cheek,” Catherine remembers, “and she died there in my arms as we all spun around.”

Ella had made a fabric “hug” for her little sister (she traced her outstretched arms on a blanket, cut it out and decorated it with pictures and stickers), and they wrapped Carmen in it. They added notes the family had written to her, and some toys Ella and Mick thought she would want. While the funeral home took Carmen’s body away, the Crillys went up on their deck and blew bubbles in her honour.

When they reminisce about the course of Carmen’s illness, Catherine likens it to a slow dripping away of her vitality, “as if someone had snipped her baby toe.” At three months she had started becoming fussy and losing some of her developmental milestones, such as grasping. But her disease, called Krabbes, is so rare—Carmen had only the 26th case reported in Canada since the 1950s—that she was not officially diagnosed until she was five months old, in August 2007. The doctors told the Crillys that the average lifespan of a baby with Krabbes is 13 months.

Carmen stayed happy and responsive until her last five or six weeks, but by nine months, she had lost her sight and needed increasing amounts of medication and oxygen. On January 12, the Crillys called their families to come and have a final visit with Carmen; it was in effect a pre-wake. After that, aside from the medical team, only her parents and Ella and Mick saw her. She ate very little at the end, and her parents didn’t want people remembering her in an emaciated, uncharacteristic state. She died on January 21.

At 39, Bill is a business developer for SNC-Lavalin, an engineering and construction firm. Catherine is 32 and had worked as an intervener with deaf and blind children and as a Montessori teacher before becoming a full-time mother. They are used to being in control, not to having a one-size-fits-all protocol imposed on them. He was raised Catholic and she Anglican, but like many people, they have parted company with organized religion. When it came to marking Carmen’s death, they could have made a perfunctory return to a religious observance—a wake, a church funeral and burial. Or they might have opted for a radically pared-down secular service—going straight to burial or cremation, with perhaps a gathering of close family at the funeral home. But neither of those alternatives appealed to them. They wanted to commemorate Carmen’s life and death, for her sake as well as theirs, with personal, custom-made rites.