Friday, May 24, 2013

Brayden's Story, by his mama



Post by Alicia

Brayden Alexander was diagnosed with a terminal brain abnormality at 22 weeks gestation, at which point they did little more than advise termination and wait for the bi-monthly ultrasounds to show that he had passed away. The pregnancy was tumultuous, but continued without a problem, and he arrived at 37 1/2 weeks despite all odds against him. At birth he was diagnosed with a rare neurological condition called hydranencephaly; he was missing both cerebral hemispheres of his brain. He did so much more than anyone would have anticipated, and shocked doctors every place we went (we are a Navy family, so we moved 5 times in his 4 years). Medical text gives a doom and gloom prognosis, but he smiled through it all and lived a joy-filled life full of adventure and fun! They said he would never smile, regulate his own body temperature, eat orally, speak, sit, walk, or really live any more than in a vegetative state... they could not have been MORE wrong!

Sadly, he passed away unexpectedly at home on November 15, 2012 at the age of 4 years old.
But, his little light continues to shine through the foundation I was fortunate enough to create in his honor. Global Hydranencephaly Foundation was incorporated on June 14, 2011 and has brought hundreds of family together while providing the information and resources necessary to provide these children with the best quality of life possible. There is no cure, we aren't searching for one, but we do believe in the impossible. We work hard to ensure that these children are given the opportunity to live the life they deserve, regardless of how short it may be.

Here are associated links:

~Brayden's entire journey chronicled at CaringBridge: http://www.caringbridge.org/visit/braydenharper
~Brayden's FB page: http://www.facebook.com/rememberbraydenalexander
~Global Hydranencephaly Foundation website: http://www.hydranencephalyfoundation.org/
~Information Page by GHF: http://www.hydranencephalyfoundation.info/
~GHF blog: http://braydenalexanderfoundation.blogspot.com/

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