Monday, January 14, 2013

Bee-Inspired: Changing the Face of Hydranencephaly

Maybe seems like a completely irrelevent quote for our foundation and it's mission.. but, sadly, it's perfectly fitting.

Doctors rarely give a family a diagnosis of hydranencephaly with a list of possibilities that exist for the child. It's presented with a "doom and gloom" prognosis and the story is portrayed as a horribly, torturous one. From a medical perspective, I guess it is... from a family's perspective, it's far from the truth.

One of our foundation's volunteers pointed out a very valuable point about a month or two ago, as I was wallowing in my own grief from the ending of my own little man's story (a story which I realize is FAR from over). Global Hydranencephaly Foundation has already done so much to change the face of hydranencephaly that is portrayed on the web... and we will work to change the face of hydranencephaly across all media platforms, as well as the hearts and minds of families and medical professionals alike. 

When Brayden was born four and a half years ago, the first time I googled hydranencephaly I was scared to death... it was ugly and there were little to no good stories to be read. Most families likely found the same to be true. 

That's no longer the case. 

Google hydranencephaly now and you will see smiling bee-isms and pictures/stories of children living and loving life. They are not without limitations, nor have they defied the odds and overcome their limited life span... but they live the best quality of life possible, regardless of length, and bless every person they meet along the way.

We need the help of our hydran-families to paint a brighter picture. Imagine where you were when you first looked up your child's diagnosis. Now think where you would rather be... right where you are now, but from the very beginning. Together we can make that a possibility for every family upon diagnosis... even more importantly in utero when doctors are quick to advise termination. We can work together to help these children live the best quality of life possible, the life we all know they can have with support and guidance that our network of families can give.

Please allow us to share your story, whether you're at the beginning or end or somewhere in the middle... even if you've given your story before and have more to share. We need your help to reintroduce our bee-ography series, our most popular posts we have shared. 

If you need help, there is a template I can send you to show you the way. There is no right or wrong way to share, but sharing can change and/or save the life of another child along the way. You never know who will stumble across your story and be inspired in to the light when they feel like they're living in their darkest days... email submissions to me at

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