Sheyenne was born in 2002. During her first year of life, we felt something was wrong. After many doctors, tests, hospital stays and surgeries, Sheyenne was diagnosed with a rare disease called Giant Axanol Neuropathy (GAN) at the age of eight. Sheyenne is one of a handful of people worldwide with GAN.
GAN is an autosomal recessive genetic condition that results in progressive nerve death. GAN generally appears in early childhood and progresses slowly as neuronal/neural injury becomes more severe. As the disorder progresses, patients typically become quadriplegics, dependent on a feeding tube and ventilator before dying typically in the second or third decade of life.
Sheyenne is 10 years old today and is in a wheelchair full-time. She is g-tube fed, wears AFOs, and a back brace for her scoliosis. Sheyenne is dependent on her family for her everyday needs.
A big supporter for us has been Hannah’s Hope Fund for Giant Axonal Neuropathy. A 501c3 public charity, their mission is to raise funds to support the development of a treatment and cure for GAN, and act as a leading resource for doctors, scientists, and families worldwide.