Amanda is a hydranencephaly (a central nervous disorder characterized by a large head and neurological deficits). I found out about Amanda’s condition after doing a scan seven months into the pregnancy. She had a brain surgery when she was 8 months old.
The doctors told us Amanda would die at 3 months but she is here and she will be 4 years on the 4th of July.
Amanda can not see, talk, sit by her self, nor do anything but she can hear and differentiate between light and darkness. She can also smile. Her condition has affected me emotionally, physically and mentally, in ways that I’m now spiritually strong and physically weak.
She cried continuously in my ears for more than two years, I have become accustomed to the sound of Amanda crying, to the extent that if I am seated somewhere quite, it feels like my head wants to explode. It was disturbing and I could hardly get any sleep. Nonetheless, I am proud of my little girl because she has been strong right from the first day; through the surgeries and the pains, she has endured it all.
Creating awareness about hydrocephalus isn’t easy because mothers with affected children usually hide their children. I believe through exposing pictures of her life journey on the Instagram and Facebook platform has helped so many mothers out there.