In early January 2022, my wife, Amy, was experiencing headaches and other symptoms resembling Dementia. Amy had several brain MRIs, a spinal tap and other various tests done to determine the cause. Over the course of several weeks all possible conditions were ruled out, save one, Prions Disease. In late January 2022, Amy was diagnosed with Prions Disease, more specifically Creutzfeldt-Jacobs Disease (CJD). CJD is a very rare disease, with approximately 500 cases each year in the United States. This disease has no cure and is not treatable. The disease is inevitably fatal. As you can imagine, this was a devastating shock to our family. Amy passed away on December 25, 2023, almost two years after being diagnosed with CJD. It is a cruel disease which left Amy unable to move or speak.
As I’ve reflected on the life Amy and I had built in Hillsdale, I realize how truly blessed we have been to raise our family here. Amy’s friends from Hillsdale, the West Coast and other various locations, as well as family have shown her and our family so much love and support, we are truly humbled. We are so grateful for these close friendships. And we are also so very grateful for the support and friendship from Valley Hospice.
I hope you will support this fundraising effort. It not only provides awareness and support for families with a loved one with CJD It also provides research grants that could bring us closer to a cure. There is much progress being made with the ongoing research.
Please note: You can choose to register to walk on Oct 5th ($30 or $35) and/or donate (see below buttons). If you choose to register and do so prior to August 15th they will provide a free t-shirt.
