Cody was diagnosed with Creutzfeldt–Jakob disease (CJD) on February 1st, 2019, the day before his 33rd birthday. CJD is a human prion disease with no known treatment or cure, care consists only of making him as comfortable as possible while the disease runs it's course. CJD is a degenerative brain disease that progresses similar to a rapid dementia, most patients die within a year of first symptoms. For Cody, symptoms began in the late summer and early fall with confusion and memory loss that's now progressed to significant cognitive decline. The progression of the disease continues to take more of Cody away every day. While he's still physically capable, he's lost a lot of his cognitive abilities, it's hard for him to carry on a conversation because he can't remember from moment to moment what's been said and finds it nearly impossible to get his brain to recall memories or what he wants to say on demand. If you'd like to see him we recommend you reach out to a member of the family (Ingrid, Mike, or Cassidy) to arrange a visit as soon as possible as he slips away more each day.
At this point we have very few answers as to what to expect, this disease is incredibly rare, affecting only about 1 in 1 million people annually, and for someone so young to contract it is infinitely more rare. This all means neither we or the doctors know much about what to expect going forward. We know we have a few months left, but we don't know exactly how much time or how quickly he'll decline. We're doing everything in our power to care for him at home as long as possible, hopefully for the rest of his life.
Cody will be leaving behind his wife, Ingrid, and two young children, Otto and Jari, ages 2 and 4, as well as his loving parents Mike and Amber, and sister Cassidy, all of whom are working hard to care for him every day. While we rally together as a family to help support Cody and care for him as he continues to decline, unfortunately the world around us marches on. Bills still come due and there are expenses incurred while providing care for him. Due to the advancement of his disease Cody hasn't been able to work since early December, leaving his family with just one income. Any help you can offer during this difficult time is deeply appreciated. The funds will go to helping support Cody's wife and children with incurred expenses during this time, including the cost of caring for him, helping with the loss of Cody's income, and when the time comes, the funeral expenses. We also welcome love, prayers, and words of support during this incredibly difficult and devastating time. Please follow along on our CaringBridge account if you'd like to know more: https://www.caringbridge.org/visit/codyspiess