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Our VWM Story

the Hollberg Family

Our VWM story begins in the fall of 2007.


Our youngest child, Annabelle, was excited to start 4th grade in a few weeks. Annie was probably the most rambunctious of our four kids at that age... always on the go, and often on the verge of getting in trouble!  It would be good to get her back in school again.

One afternoon we noticed Annie seemed to be dragging her left leg a little, and she said that she felt a little tingly in her right hand.  We immediately took her to Primary Children's Hospital, but by the time we arrived, the symptoms had gone.  After much arm twisting of the doctors by Susan, Annie had an MRI scan which we were told showed major white-matter issues in her brain.  A neurologist was brought in, and he suspected that it may be a rare type of Leukodystrophy, but he would need to send the images to an expert in the Netherlands to confirm.

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