[Excerpt]

A Host of Cells

My daughter, India, died five years ago, when she was 16. Although she’s dead, her cells live on in a research laboratory at the University of Ottawa. I can’t bring myself to go there.

About a year after India died, my husband, Mark, visited the lab. At the time we were deep in grief and had decided to stay with a close friend. We couldn’t be in our own house. Whenever I walked through the door I was assaulted by images from the past— India trying to catch her breath as she had a seizure on the sofa; paramedics carrying India down the steep staircase on a stretcher; the empty space in India’s bedroom, by the window, where her hospital bed once stood.

After Mark returned from the lab, we sat on our friend’s porch to talk. He looked tired and sad so I was careful not to press him. All that remained of our only child were the cells my husband had viewed through a microscope. Finally, Mark lit a cigarette and said, “It was like looking at a city from space.”

I thought about that conversation on the porch, four years later as I was flying into Vancouver airport at night. From above, the flickering yellow lights of the city made me think of a video I’d seen of a nerve cell firing: the crowded centre was the nucleus; the suburbs branching from it, the dendrites; and the stretch of highway heading into the city was the slender nerve fibre known as the axon. For those who have not lost a child this might seem strange, but when my plane arrived in Vancouver I was hoping to catch a glimpse of her, if only in the shape of a metaphor.

Dr. Steffany Bennett, who runs the Neural Regeneration Laboratory where India’s cells are housed, told Mark she thought our daughter’s cells were beautiful. He thought so too, but he didn’t know if all cells were beautiful in the same way. India would have enjoyed their attentions. Like most teenage girls, she never tired of being admired.

To me, India’s cells are like starlight —a hint of the brightness that was my child. To say she was unique is an understatement. India died of Spinal Muscular Atrophy with Progressive Myoclonic Epilepsy (SMA-PME), a disease that Dr. David Dyment—a clinical geneticist and Dr. Bennett’s collaborator—described as “ultra-rare.” While there are no formal numbers, the condition is seen in significantly fewer than one child in a million.

India’s symptoms began when she was 10 years old, with petit mal seizures that we were told she’d probably grow out of. By the time she was 15, she’d suffered grand mal seizures so ferocious that a veteran pediatric nurse who witnessed one told me later it was the worst day of her career. In the last two years of India’s life, her muscles became so weak that she developed a tremor in her voice and lost the ability to walk or use her arms. The talented teenager who’d once amused herself by drawing detailed manga characters while singing her favourite songs from Rent and Wicked could no longer hold a pencil or a tune.

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