Gene Therapy For Giant Axonal Neuropathy – Lottyn Wants Chance To Write His Own Story


Lottyn is 13 years old. He was diagnosed with a rare condition called Giant Axonal Neuropathy at the age of 8.

Giant Axonal Neuropathy is a rare, autosomal recessive neurological disorder that causes disorganization of neurofilaments. Neurofilaments form a structural framework that helps to define the shape and size of neurons and are essential for normal nerve function in the brain.

Giant Axonal Neuropathy has taken away Lottyn’s independence and dreams he has for his future.  But GAN has not stolen Lottyn’s love for life. He wants the chance to write his own story, where the ending is not already written for him.

Lottyn enjoys spending time with his little brother and sister. He loves to play board games and also games on his iPad. Riding his golf cart with his family is a favorite in the evenings. His favorite week every year is spent at the MDA summer camp with his friends. He enjoys school and is a social animal!

Lottyn and other children with Giant Axonal Neuropathy are depending on gene therapy to help them rewrite the ending to their stories.

 

 

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