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Sat, June 12, 2004 Run helps mom deal with loss By LICIA CORBELLA, EDITOR Patti Zabot is running herself ragged in the memory of her daughter Brianne and she's hoping you will too -- though a leisurely stroll will do the trick, too. The hard work Patti is putting into the second annual Brianne's Hope for a Miracle Five Miler and Fun Walk helps the still-grieving mom deal with the death of her "little angel." Brianne was just four-years-old when she passed away on Feb. 22, 2003, after struggling most of her too-short life with Leukodystrophy -- a rare degenerative disease that attacks the myelin -- or insulating layer covering the white matter and nerves in the brain. Patti pops a videotape into her VCR of former television news reports showing her blue-eyed little girl smiling, even amidst visible jerking and seizures that wracked her little body from the age of 11 months. "Ah," coos Patti. "Isn't she gorgeous? Look at that smile. Look how upbeat she is, even though those seizures are so exhausting." Patti's eyes are filled with tears. But she wipes them away and instead tears into a box of stuff sent to her by another family in London, Ont., whose daughter, Bethany, also died of Leukodystrophy. The June 25 run-and-walk Patti is organizing with the support and help of the Running Room and a host of other sponsors will raise money for the Alberta Children's Hospital Foundation and Bethany's Hope Foundation -- both of which are searching for a cure for Leukodystrophy. It affects one-in-100,000 births and is currently afflicting about six children in Calgary. "It's such a devastating disease. For the longest time, Brianne went undiagnosed and once we knew, there was nothing we could do except just love her as much as we could. We felt so helpless and lonely at first." Brianne appeared a perfectly healthy baby until she was almost one-year old. She sat up, said words and crawled. Then the seizures started. After some initial treatments, the seizures stopped and the family thought the problem was over. But it wasn't to be. The seizures came back and soon, Brianne lost the ability to walk, use her right arm and sit up. Nine days before she passed away, she even lost her eyesight. And yet through it all, Brianne remained cheerful and a bright light to all who knew her. Patti says her husband Rick and their other daughter, Kayla, 8, help out with the walk, too. Indeed, students, staff and parents from Kayla's school, Erin Woods Elementary, are raising money and taking part in the run. Raising money to find a cure helps Patti, a dental assistant, to keep Brianne's "specialness" alive and to try to prevent this disease from killing other children. While she finds it emotionally draining to have to tell Brianne's story to each of the wonderful sponsors who have donated some spectacular prizes for the walk, Patti says it is also therapeutic. "I could talk to you for a week about the blessings that have come out of this -- just the people who came into our lives and have shown us so much love and care." Patti says she thinks the recent Stanley Cup playoffs have kept people from signing up for the run in the same numbers as last year, but she's sure that will pick up soon. Brianne's Hope for a Miracle Run and Walk takes place Friday, June 25 at 6:15 p.m., starting at the boat dock in North Glenmore Park. You can register at any Running Room store or online at http://www.runningroom.com/. The prizes, which include several luxurious two-night getaways in Banff, as well as lavish care packages, will be doled out to the top three runners in each category and also by random draw for those in attendance. So run on over to the Running Room and keep Brianne's
memory and hope for a cure alive. Copyright © 2001, Sun Media Corporation
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