After an enormous snowstorm in Oklahoma City, Oklahoma, Amanda made her presence to the world. On December 27, 2009, we dug our car out of the snow, headed to the hospital and our baby Amanda was born.

When Amanda  turned one, she started to exhibited the hallmark characteristics of her sister, Chrissy: kinky, curly hair.  Chrissy, with a confirmed diagnosis of Giant Axonal Neuropathy (GAN), was the impetus for the decision to have Amanda tested.

We received word on February 2, 2012, of a confirmed diagnosis for Amanda.  Based on DNA sequencing that had to be done in Europe (as there is no test for GAN in the USA), Amanda did indeed have GAN.

GAN is a neurodegenerative disorder that slowly robs its victims of the ability to walk, speak and swallow, and is terminal by the second or third decade of life. There is no treatment or cure. She is the youngest ever diagnosed and the first to be diagnosed without symptoms.

At the age of two, Amanda is thankfully developing normally, so far.

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