Giant Axonal Neuropathy (GAN) Takes Over Chrissy’s Small Body Causing Paralysis

August 7, 2012

Chrissy was born on June 30, 2005 in Dallas, Texas. Her spirit is full of grace, she has golden brown eyes that will melt your heart. Her head is surrounded by light brown very kinky curly hair. Little did we know that this was a marker of the terrible genetic disease that would later develop in her little body.

When Chrissy was about three years old she began to walk with a very awkward gait and would fall quite frequently. Her pediatrician thought she would grow out of it. A few months later she lost reflexes in her legs and began to experience sudden, unexplained loss of control of her legs and would fall to the floor.

After 18 months of agonizing testing and many trips to Dallas Children’s Hospital, the earth shattering diagnosis was made: Chrissy was diagnosed with Giant Axonal Neuropathy, a very rare genetic disease that only a hand full of children have in the United States.

GAN is a progressive neurological disease that first affects the peripheral nerves then later the autonomic nerves. It causes paralysis of the legs and arms, and eventually the entire body, leaving the victim on breathing machines and unable to move, speak or swallow. It is terminal by the second or third decade of life.

Today, Chrissy can walk short distances with her braces and walker. For longer distances she must use her wheelchair.

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