Contact Team Rachel
Email address: team@teamrachel.com
Phone/MMS: (617) 755-4338
Facebook: Click here to visit Rachel’s Facebook Page
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My race speech
I am reposting the “jist” of my speech here for those that were too far to attend or those folks who came but were way in the back…. Here goes: Hello everyone. My name is Kat von Tungeln and I am the proud Mother of 4 really great kids: Rachel is 11 and Julie London and Boston are 7 6 and 5. About 3 years ago, and truly looking further back it was longer than that we noticed Rachel having difficulty with her short term memory and simple activities like planning out getting ready in the morning for kindergarten. After...
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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.
…..mother or 3……my 7 year old son has just been diagnosed with JNCL. I struggle to form a thought, let alone breathe….we found out 2 weeks ago and I haven’t taken a breath since. How is this explainable to a child that hasn’t been given the opportunity to experience life? And his older brother….and baby sister.
It’s been a year since I can remember my baby having a real sense of normalcy.
Although there are frequent, momentary lapses of composure…I am his mother and I’ll be damned before
I lay down and let the diagnosis define
our life(s). Not without 1 hell of a fight.
I’m in need of guidance and ass kicking support….
Kat
Continued from above….
Kat, any guidance you can offer…..I’d be forever in your debt.