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Community support touches Kira's parents

Mario Toneguzzi
Calgary Herald

Tuesday, October 19, 2004

Kira - Calgary HeraldPaul and Jennifer Bekker, and son Lucas, dote on Kira, who has Leigh's disease, a rare, degenerative condition.

Doctors gave baby Kira Bekker only a few weeks to live last December.

She had been diagnosed with Leigh's disease -- a rare and terminal degenerative condition that affects the brain.

But, today, the 16-month-old baby is living at home under palliative care, continuing to defy the odds and providing inspiration to the many lives she touches in her family and community.

Kira, her family and friends gathered this summer to celebrate the child's first birthday, June 6, and to also raise money for the Alberta Children's Hospital. A goal of $5,000 was set through a golf tournament and silent auction. More than $50,000 was raised.

"We didn't know how many lives she did touch," said father Paul Bekker.

"Initially, when Kira came home (from the hospital), things were so dire," said mother Jennifer.

"We were living each day where we thought this could be her last day, but she's beating the odds," Jennifer Bekker said.

The first five months of Kira's life were marked by endless crying. If she wasn't breastfeeding or sleeping, she was crying, says Jennifer.

The Bekkers initially thought it was colic.

When Kira was two months old, she was referred to an ophthalmologist at the Alberta Children's Hospital because she was not making eye contact or following things with her eyes.

When the suspected colic did not lessen at three months, she was taken to the family doctor, who noticed her poor muscle strength and her irritability.

She was immediately referred to a pediatrician, who told the family he thought Kira had a problem with her brain.

A month followed as Kira underwent a battery of tests which showed she was blind, had a hearing impairment, and had abnormal brain waves.

On Halloween last year, she was hospitalized for seizures.

Kira was showing signs of brain stem deterioration, which controls breathing, heartbeat and all major organs.

Leigh's disease falls into the category of mitochondrial diseases which result from the body's inability to produce energy at the cell level.

The disease is degenerative, with no cure. It is also genetically linked, but doctors have been unable to determine how Kira inherited the disease.

After almost two months in hospital, Kira was discharged Jan. 23 and has been at home since under 24-hour care.

She is fed through a tube into her stomach and is on oxygen.

"We thought we could care for her at home, keep her at home and meet her medical needs here," says Jennifer.

"We feel Kira has done much better at home. The care she received from the hospital was fantastic, but being in the environment of our home we've noticed she's doing way better. . . .

"The first birthday was kind of a milestone we never really thought we'd make it to."

The Bekkers say they are thankful for the "overwhelming" support they've received from everyone since Kira was born.

Money raised in honour of Kira is marked for the children's hospital -- for the purchase of specialized medical equipment and for present and future child palliative care programs.

PHOTO CREDIT: Lorraine Hjalte, Calgary Herald

© The Calgary Herald 2004