I created Joshy in Big Sky Country to chronicle the life and adventures of Joshy, my 17-year-old son diagnosed with a rare and terminal neurodegenerative disorder and moderate intellectual disability, as he explored his new home state of Montana. We moved to Montana on May 27, 2021, and did as many things on his "Big Sky Bucket List" as we were able to, given the downward turn of his health.
On April 4, 2022, Joshy entered into the presence of Jesus, finally free from the years of pain and suffering. Our family hopes to continue his bucket list in his honor. Initially, this GoFundMe was created for him, but many have asked to be a part of our family's wish to carry on, meeting new people and exploring the beautiful state of Montana. All contributions will go toward gas, meals, admission, motel stays, etc. In addition, I will be posting updates on our adventures.
Thanks to everyone for your love and support.
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. Unfortunately, there is no cure and no standard course of treatment.
Since then, Joshy has had a g-tube placement, a complete spinal fusion to correct a 90-degree lordosis, and a baclofen pump inserted to decrease spasticity and dystonia. As a result, he's lost the ability to walk, and pain and weakness characterize his daily life, although it never seems to diminish his smile.
Born and raised in Colorado, Joshy and his family set on a new course with a move to Montana to be near family and spend the rest of his days meeting new people and crossing off adventures from his "Big Sky Bucket List."