Saturday, December 1, 2012


My apologies in the lack of posts the past few weeks... as most of you know, I (Alicia Harper) am the main author here and founder of Global Hydranencephaly Foundation which maintains this blog in correlation with our nonprofit. The inspiration for GHF is my own son Brayden Alexander & the many children and families we have come to know and love from across the globe. Coined as our little "bees"... these children are the most joy-filled, loving children I've ever known.

On November 15, Brayden joined his angel friends when his little body just couldn't overcome the cold he had been battling. He died at home after myself and the EMTs could not revive him around 12:30... 
Devastating does not describe the days we have faced since that Thursday a little over 3 weeks ago. The sadness is starting to turn to a passionate fuel for the foundation, which I've always had but now have in a different, incredibly more dedicated way. This foundation is my own little man's namesake and I will be sure his light continues to shine through our mission.

The foundation is not all about Brayden, simply inspired by the strength and determination he demonstrated throughout his life of defying all odds set against him... it is about the 1 in 10,000 pregnancies across the world that will be affected by the oftentimes unheard of diagnosis of hydranenephaly. It is about the parents who will be encouraged to terminate the pregnancy upon diagnosis, because hydranencephaly is currently deemed a condition "incompatible with life". It is about those parents who refuse to accept that there is no hope for their child and seek out more information and guidance to provide their children with the best quality of life possible. It is about those parents who love their children enough to look for adoption as an option for their child instead of advised termination, once the small list of expectations and fear of the unknowns is delivered. It is about those children who are not without limitations, but who fight with a smile to live life to its fullest...  

And when those of you reading this feel as if there is not possibly ONE thing you can do to help change the many misconceptions that exist surrounding a diagnosis of hydranencephaly... you're right! There are actually MANY ways you can help, but the easiest is simply by educating yourself on hydranencephaly through our website and through asking specific questions. Education is power. That power can save a child's life by giving  hope to a parent who has had it all stripped away by the person they trust the most to care for their child, a doctor. 

Seek us out on Facebook, Twitter, YouTube, our websites, and of course subscribe to our blog via email so you never miss a post... because they will be coming daily, if not more often! Should you ever meet a family whose life has been touched by hydranencephaly, please do not hesitate to put them in direct contact with me via email or phone. 

We also accept donations via PayPal or check (see our website for details), which are used to support our families in whatever capacity they need as well as provide printable resources and awareness merchandise: most currently in planning the first ever Hydranencephaly Foundation Conference in Dallas, Texas in June 2013.

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