My son, Joshua, entered into the presence of his LORD and Savior, Jesus Christ, on April 4, 2022. This summer, our family hopes to pick up where we left off on his “Big Sky Bucket List,” and I’ll be blogging our adventures. This page will be updated in the weeks to come.
Joshy in Big Sky Country chronicles the life and adventures of Joshy, a 17-year-old diagnosed with a rare and terminal neurodegenerative disorder and moderate intellectual disability as he explores his new home state of Montana.
In 2015, Joshy was diagnosed with idiopathic Neurodegeneration with Brain Iron Accumulation (NBIA), a rare, inherited neurological movement disorder characterized by an abnormal accumulation of iron in the brain, which causes progressive degeneration of the nervous system. There is no known cure and no standard course of treatment. Since then, he has had a g-tube placement, a complete spinal fusion to correct a 90-degree lordosis, and had a baclofen pump inserted to decrease spasticity and dystonia. Even though Joshy has lost his ability to walk, his smile never waivers.
Born and raised in Colorado, Joshy and his family are setting on a new course and are moving to Montana to be near family and to spend the rest of his days meeting new people and crossing off adventures from his “Big Sky Bucket List.”