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Rare disease claims toddler

Gwendolyn Richards - Calgary Herald

January 6, 2005 - A Calgary toddler afflicted with a rare and incurable degenerative condition has died. Kira Bekker, just two days shy of turning 19 months old, died in her parents’ arms Tuesday. Paul and Jennifer Bekker, who had cared for their daughter since her release from Alberta Children’s Hospital last January, said having Kira at home probably contributed to her being able to battle her disease.

“We were maybe a little different from a regular family, but we felt like a family,” said Jennifer.

Kira was believed to have a condition called Leigh’s disease, which is characterized by the degeneration of the central nervous system.

In Kira’s case, symptoms began showing about five months after she was born when she began having seizures. Jennifer said those seizures slowly damaged Kira’s brain. She also had no muscle tone and couldn’t swallow or move her body meaningfully. She had to be tube-fed and be given oxygen. But other than the symptoms, there was no way to prove if she had Leigh’s. “Every test she had came back normal,” said Paul. “She’s a bit of a mystery.” Because she couldn’t sit up or laugh or even say hello, Jennifer said it was sometimes hard to interact with her daughter. “But now that she’s not here, we realize how much she enriched our lives,” she said. “It feels really empty without her here.” Kira loved baths and cuddling with the hordes of stuffed animals given to her by people in the community that kept her in their hearts. She liked to be held, too. “She was like having a baby who never grew and was always the cuddliest kid,” said Paul. Kira had been battling a series of colds that seemed to wear her down before she died. Still, the Bekkers were glad to have had the time with her. She wasn’t expected to live more than a few weeks after the diagnosis. The family celebrated her birthday in June by holding a fundraiser that saw more than $50,000 donated to the Alberta Children’s Hospital.