Our son Josh lost his battle to CJD on July 30, 2020, at the young age of 42. We started noticing signs of the disease in October 2019.
At the time, Josh lived with a friend in a completely different town than us. When we would talk to him on the phone, he would say things that didn’t make any sense. He would ask us why we didn’t stay or why we took his truck when we came to see him when we had never even been there. Josh started forgetting things, he couldn’t remember how to dial our phone number, and he started losing his balance and falling on multiple occasions. We were scared.
Initially, we thought he had contracted Lyme Disease because he grew up in a rural Kansas community where Lyme Disease was not uncommon. After several visits to a well-known Medical Center near our hometown, an MRI scan, and a spinal tap, Josh was diagnosed with CJD. I remember the day the doctor called and told me, “Josh has CJD, and there is nothing we can do for him.” I fell to my knees and all I thought was how am I going to tell his mom?
In March 2020, we brought our son to a care facility in our small hometown of Tonganoxie. At this time, Josh was still able to talk and feed himself, but he was no longer able to walk on his own. The facility allowed us to stay there day and night, and that’s where we spent the next 5 months, slowly watching our son being taken from us. Josh slowly lost the capability to feed himself, he lost his ability to talk, and what he hated the most was not being able to use the restroom on his own and having to be changed by the nurses and me.
Although he couldn’t talk, he communicated to us with his eyes, his head movements, and his facial expressions. He would blow kisses and raise his eyebrows at his mom, his sister Jessica and his best friend Melissa. Toward the end of the fifth month, he lost the capability to eat or drink through a straw. We would put wetting sponges in his mouth so he could get small amounts of water and wet his lips. It wasn’t long until he lost that as well.
In the last week of his young life, Josh slept most of the time. He was no longer able to swallow the small amounts of water from the sponges. His breathing got heavier day by day as he lost the muscles that were needed to take a breath. He wanted so much to live, but GOD had other plans for him. As we watched him take his last breath, his mom Patsy, his sister Jessica and I were all by his side, holding his hand and reminding him how much he was loved.
We started Kansas City Strides to honor Josh and all those who have lost their battle to this horrible disease. Strides for CJD allows us to connect with other families who have been affected, in addition to raising awareness and funds to support CJD research to find a cure for this heartbreaking disease.