In the News

Fri, April 8, 2005

Mourning parents honour spirit of their daughter

By LEANNE DOHY

The rose-coloured candle flickering on Patti Zabot’s coffee table burns for a little boy who died Monday, killed by the same disease that took Zabot’s daughter Brianne two years ago.
Her dream is to prevent other children from suffering the same way. In pursuit of that dream, Zabot has poured countless hours organizing the third annual Brianne’s Hope for a Miracle fundraising run and walk, to be held June 4 in North Glenmore Park. The tents are booked, sponsors are being solicited and the purple “live strong” bracelets are on order.

The money raised will go towards research into Leukodystrophy, the rare neurological disease Brianne fought for most of her short life, and to the Alberta Children’s Hospital Special Children’s Fund, used to offer economic assistance to the families of sick kids. In its first two years, the event raised $26,000.
Brianne Zabot suffered devastating seizures that eventually robbed her of all muscle tone and the ability to swallow or cough. Two weeks before she died at the age of four, the seizures attacked the part of her brain that controlled sight.

“That night, the seizures had been bad, and I had to bathe her twice,” Zabot remembered. “I got her back into bed, and she wanted her two favourite stories, so I grabbed them. And she said, ‘Mommy, turn the lights on.’

“She’d gone blind. I just thought, ‘Oh God. Not now.’ ”
Nine months earlier, doctors had said the child’s condition was terminal — news that her mother refused to accept.

Brianne was normal in her development and perfectly healthy until one day when she was 11 months old. One of Brianne’s arms began to twitch every few seconds, although she still babbled contentedly.
The family’s visit to a medical clinic that night began a long, torturous journey that ended when the little girl died Feb. 22, 2003, leaving the family with too few answers.

The pain doesn’t ease, and as Zabot tells her daughter’s story — sharing videos that show Brianne in happy, animated playtimes with her sister, as well as in the exhausting throes of the seizures her parents documented for doctors — the tears flow unchecked.

“Not too long ago, my daughter Kayla asked, ‘Why Brianne and not me?’ ” Zabot said. “I told her, ‘That’s why Mommy is fundraising. To find answers to some of our questions.’ ”

The family also wants to help parents of ill children, regardless of whether they face the same diagnosis as Brianne. Parking, cafeteria food, time off work and other expenses can create a heavy financial burden for parents with a critically or chronically ill child.

“We were financially OK, but it was rough at times,” she said. “When you can’t show up for work for weeks at a time, that’s a real blow.”

The dental assistant will always be grateful to her own boss, whom she said was her “angel” at the time.
“He told me over and over again, ‘Don’t worry about your job,’ ” she said. “But not everyone has someone like that.”

Zabot speaks regularly with parents whose children have been diagnosed with Leukodystrophy, and offers support.

“My heart just breaks for them,” she said. “It’s so hard. Losing a child — it’s just the worst thing a parent can go through. It’s the worst thing I’ve ever been though.

“I still miss Brianne every day, but I know I’ll see her again someday, and that’s what gets me through. I have my older daughter, and I want to be here for her, but sometimes I wish my life could hurry by so that I could be with her again. “But while I’m here, I think this is my purpose. I want to be useful while I’m here.”

Pledge forms for the run are available at www.briannesleapofhope.org.

Registration is through The Tech Shop, 2415 4 St. SW, 228-3782, or online at www.runningroom.com.

LDOHY@THEHERALD.CANWEST.COM

Grant Black, Calgary Herald
The Zabot family — Kayla, 8, mother Patti and father Rick — holds a fundraiser for families with children suffering from deadly diseases such as the one that killed their daughter Brianne.

This story is Copyright © 2005 CanWest Interactive Inc. All rights reserved.
Reprinted with Permission

Briannesleapofhope.org copyright 2005