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8/29/2016 Latest post:
Hello and welcome to the official #prayforhaven site! Haven is our adorable, fun, loyal, kind hearted baby girl. She is currently battling an evil disease that hides it horrible face and lays in her pancreas. 1 year ago we were told she has a "simple" diagnosis of CFTR . Which in non medical terms, and her Daddy's best description is a mutation of the Cystic Fibrosis gene that is attacking her nerves and pancreas. So she has lots of horrible bouts of pancreatitis that land her in the hospital for weeks at a time in horrible pain. Since the day the "simple" diagnosis was given, she has been in patient 11 times, takes tons of daily medication, a team of specialist, and everyday pain, trying to find her new "normal"!! :)