Young Sisters Brave the Fight Against Giant Axonal Neuropathy

June 20, 2013

In February of 2012, Amanda was diagnosed with Giant Axonal Neuropathy (GAN). GAN is a degenerative neuropathy that gradually kills the motor neurons and leave the patient’s entire body completely paralyzed. Amanda’s mutation of the disorder will cause her progression to be “faster than normal” (the disorder is so rare that we have no statistics to actually tell us what is “normal” progression).

In spite of what she is facing, Amanda greets the day with a beautiful smile and lights up every room she enters. She is an unstoppable force of nature, with an unquenchable thirst for life. At three, she is already showing the early symptoms: falling down, dropping things. But she picks herself up and marches on, greedy for the daily adventures of life.

Amanda just wants to be “a good girl.” She is eager to please and extraordinarily friendly, greeting every person she seems with her charming smile. She loves to hug and wants to comfort anyone who is sad. She and her sister, Chrissy, are facing this disorder together, and Amanda encourages her sister and cheers her on.

In the 18 months since Chrissy’s diagnosis in September 2012, she has become almost entirely dependent on her wheelchair, and now suffers from vocal chord paralysis. Miraculously, she is still able to breathe on her own and can still speak because her vocal chords are paralyzed partially open.

Chrissy is a bright, beautiful eight year old with an amazing imagination and a thirst for life and love that seems endless. She loves her family and friends and will not hesitate to lend a helping hand when someone needs it. She wakes up everyday and bravely faces her lot with a grin and a desire to enjoy life as much as she can. If you ask her what she wishes for, her answer is always the same: “to walk.”

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