What is Hydranencephaly?

Hydranencephaly is a rare neurological condition, knowingly occurring in fewer than 1 in 100,000 births across the globe, in which the brain's cerebral hemispheres are absent and replaced with sacs of cerebrospinal fluid. There is no known cause, no cure, and very little optimism available for those diagnosed. Most medical professionals will tell the family of such a child, that they will likely not live past the age of one year.

Chrissy, Our Miracle Child

Our daughter, Christina Ann, was born December 26, 2000. She was diagnosed at birth with Hydranencephaly. She was to be placed for adoption and a couple had been chosen, but when her diagnosis became known, the family backed out. The social worker at the hospital contacted our adoption agency looking for a family for this sweet little baby girl.  Our family stepped up and thus began our life with the diagnosis of Hydranencephaly!

Chrissy is a sweet, loving, happy and healthy little girl. She is now almost 12  years old. She has blessed our life tremendously and we will be forever grateful for that phone call from our adoption agency asking if we would consider taking her. She is the very center of our home and a joy to take care of and parent.

She is also miraculous! This website has been created to tell her story. Subsequently, in 2011, we adopted a second baby girl with the same diagnosis. Her name is Sophie.  It is my hope that the stories of Chrissy and Sophie will give hope and support to other families facing life with this diagnosis for their child. Families need to know that Hydranencephaly is not a death sentence, but simply an obstacle in the lives of these precious children. They can and do live happy, fulfilling lives!

Come back often for updates as I begin the telling of our journey with Chrissy and Sophie - my miracle girls - and our life with a Diagnosis of Hydranencephaly!

 

 


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