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Elijah's CCM fight
Apr 4, 2017 Latest post:
Apr 10, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. While there's no escaping or denying Elijah's diagnosis, we want to reserve Facebook for what little "normal" life we have. There are days I have a hard time wrapping my head around this life we live now, and on those days it's nice to just snap some silly pics of our kids without going into medical discussions. I'd also like to utilize this space to educate as many as possible about Elijah's condition, and hopefully, raise awareness so that more research can be done. Elijah's official diagnosis is Cerebral Cavernous Malformation with a DVA. There are two types of malformations, sporadic and familial. It is the agreement of all of the Neurosurgeons that he does not have the familial type of malformation. There is a wonderful organization that is called Angioma Alliance that has a tremendous amount of information available on their website, dedicated solely to his rare condition. If you have a free moment, please check it out. I did not know such thing existed until May 5th, 2016. My Momma instinct told me something wasn't right after being told by 2 Dr's that what he was dealing with was the flu. I am forever thankful I followed this instinct, but I can see how easily this could have been missed. Please educate yourself and feel free to share Elijah's story. Knowledge is power.