Tori was diagnosed a few months ago with Stiff Person Syndrome with Progressive Encephalomyelitis with Rigidity and Myoclonus (PERM), a rare and devastating autoimmune neurological condition. Only around 45 people in the USA are diagnosed with this disease. This diagnosis led to a recent two-week hospitalization, and since coming home, Tori remains mostly bed bound due to the increasing severity of her symptoms. She experiences frequent, intense spasms and neurological decline, making daily life extremely challenging. As her spouse, I have become the main caregiver for our five children, though we are fortunate to have wonderful family and friends who have stepped in to help. Also, a giant shoutout to our church community at Gate City Vineyard and our wonderful Pastor Beth Graham. They have made this journey so much more bearable.

Tori has begun immunotherapy treatments, starting with IVIG, and is taking several medications to manage her symptoms. However, the road ahead is uncertain, and her condition is both progressive and potentially life-limiting. The spasms can be so severe that they have caused broken bones, and the rigidity and myoclonus make even simple movements painful and exhausting. The encephalomyelitis component of her diagnosis brings additional complications, including inflammation of the brain and spinal cord, which affects her speech, vision, swallowing, breathing, and memory.

We are raising funds to help cover the mounting medical bills, treatments not covered by insurance, and the cost of mobility aids, as Tori will need a wheelchair and other supportive devices to function daily. We also anticipate needing home care, as well as modifications like shower and bed bars to ensure her safety. With Tori unable to work and my own work limited by caregiving responsibilities, we are also seeking help with daily expenses and the cost of nutrition and protein shakes, as Tori is on a mostly liquid diet.

This diagnosis has been heartbreaking and terrifying for our family. We never wanted to ask for help, but this is beyond our reach. We are so grateful for everyone who has supported us so far, and we are incredibly thankful for any help you can give. Your support means the world to us during this difficult time.