This week they have off school and my parents have been watching the girls. I am really grateful to have what we have but maaan how much I hate that John can’t take a couple of days off. This is something that we have to work out because I really want to at least pretend we are a normal family and go away for a couple of days during vay-cay.
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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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