Trash day has been once again celebrated, and… Rachel is in great spirits. Life is good!
This weekend we have two girl scouts things (one for each girl), we’re taking Holly to the mall for Doggy pictures tonight and baking cookies for the drama kids. Sunday we are going POLAR EXPRESS!!!!!!!!!!!!!!!!!
This weekend, my friends, is going to kick ass!
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TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
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