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SALT LAKE CITY — Vanishing white matter may not be a disease most are familiar with, but one girl who deals with it every day is seeing to it that people learn of it.
Annabelle Hollberg, 13, used to be a just a normal kid like any other. Then about five years ago, without warning, everything changed in an instant.
It took more than a month for the doctors to diagnose her with Leukoencephalopathy with vanishing white matter, a disease unknown in the United States at the time. The disease attacks the white matter of the brain, debilitating the nervous system. Among other challenges it poses, it makes speaking and moving difficult for Annabelle.
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But those who know her might tell you that it's not her disability that makes her different, rather her determination.
Her friends and family started The Vanishing White Matter Foundation, to help raise awareness and money for research of the disease.
"Annabelle's had just a great attitude," said her mother, Susan Hollberg. "She's just joyful every day to be here and be alive. She's never complained for a minute."
Always keeping a good attitude, she decided to set a new goal for herself: swimming.
"At the beginning, she couldn't swim an inch," Susan Hollberg said. "She was literally like a brick. She would sink."
Very slowly, Annabelle got better at swimming; much better.
Last Saturday, she used her skill to raise awareness for the Vanishing White Matter Foundation. Vanishing White Matter is still relatively unknown, and treating it is difficult. There is no medication for it, no research and no funding. To raise money for a cure, Annabelle swam 300 meters all by herself.
"Everybody rallied around her and a lot of people have contributed," said her father, Brett Hollberg.
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