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The Beerys Dystonia Journal

We hope that this journal will help others better understand one family's journey with Dystonia.

Monday, February 06, 2012
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I took Alexis to Rady’s Children’s hospital today to be tested for Cystic Fibrosis.  She has been asking a lot of questions about the test, I explained that it’s just a sweat test.  She tells me that she hopes she has Cystic Fibrosis so she can have an answer to her mystery.  I pray that she doesn’t.

Alexis had to walk around for 25 minutes with a wrist band, of sorts, trying to collect sweat.  She is so winded, exhausted, fatigue has set in and she is wheezing like crazy.  I tell her she has to keep walking, trying to let her think she is just being lazy.  Inside, I’m completely aware that my little girl’s strength, her abilities, are starting to waiver.  Please, Lord, help us.