Ethan has such a great outlook on life despite the obstacles he faces everyday. He is never in a bad mood. He shines on everyone he meets and leaves them with inspiration. Ethan loves to play with cars, Duplos and his Play Mobile toys. He was diagnosed with Giant Axonal Neuropathy at the age of five. Ethan dreams of being able to walk again one day and be able to play like other kids.

Giant axonal neuropathy generally appears in early childhood (onset is typically 2 1/2 years of age). It progresses slowly as neuronal injury becomes more severe. Signs of GAN usually begin in the peripheral nervous system, which controls movement and sensation in the arms, legs and other parts of the body. Most individuals with this disorder first have problems with walking. Later they may lose sensation, coordination, strength and reflexes in their limbs. Hearing and visual problems may also occur. Extremely kinky hair (as compared to others in the family) is characteristic of giant axonal neuropathy.

Currently, there is no cure or treatment for GAN. As the disorder progresses, patients become quadriplegics, dependent on a feeding tube and ventilator. Children who are diagnosed with the disease have a life expectancy no longer than their early twenties while some die much younger.

2 thoughts on “Ethan Shines and Inspired Through his Struggle with Giant Axonal Neuropathy”

  1. Help Ethan and all the children around the world with GAN

  2. Michelle says:

    Hi, I’m offten searched the net for information when I have needed it. The young man I nurse (full time at his home) has GAN, and he sounds so much like your son and looks so much like him also, same shaped head , hair and so lovely it makes you want to cry! He is 23in a few weeks and although he has a Tracky tube fed cathitorised and only has small movements in his arms and head he is the still the most lovely guy you can ever meet. I’m so going to read some of this tomorrow when I get there.

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