Tuesday, December 20, 2011

Bee-lieve Campaign: Bee-worthy Share

As we near the end of the month, the end of our Bee-lieve campaign, and celebrate the holidays with our families... posts may be few and will likely be short. The video below has been circulating Facebook and I am in tears after finally watching it this morning... though this sweet boy has a different neuro-tube defect, Spina Bifida, his story is similar to that of our little ones living with hydranencephaly. 

"He will not survive to birth. If he does, he will not live long past birth."

"He will not _______(insert long list of life necessities here: i.e. breathe, eat)_________

"He will never recognize you, he will live in a vegetative state."

Those are the "facts" that exist in medical textbooks, what our professionals are told about hydranencephaly. Parents know these to exist as misconceptions, but what about the parents who have placed all of their trust in the professionals to make the best decisions for them and their children? Education & awareness is essential, so please take a moment to share our resources on the net:

our web site: http://www.hydranencephalyfoundation.org
our information site: http://www.hydranencephalyfoundation.info
our Facebook page: http://www.facebook.com/globalHYDRANENCEPHALYfoundation
our Family-to-Family Resource Network on Facebook: http://www.facebook.com/groups/hydran.families
Twitter: http://www.twitter.com/Hydranencephaly
YouTube: http://www.youtube.com/hydranencephalykidz

Here is Isaac's story, be sure to click on our music player at the bottom:

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