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Posted Mar 07 2012 2:17pm
In 2007 when Haven was first diagnosed and we first learned of her Cancer and ROHHAD Syndrome we had no where to turn.  Our doctors told us about a boy in Chicago that one day stopped breathing and that's what Haven has.  Then in an effort to prove them wrong I set out to spend my life searching for anything else and to find out what the heck this disease was.  Only what I found was NOTHING! 
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