Living on in our hearts forever

We always knew Daniel was one in a million. As it turns out, he was more like one in a billion. To be under 30 and die from CJD is that rare.

Daniel had just turned 18 in the fall of 2012 when he first mentioned blurry vision. Six months later, he could barely walk. Daniel was scared, anxious and depressed. He couldn’t sleep. He struggled to reach for a glass of water and his hands would tremble as he raised the glass. His voice was shaky. His laughter sounded oddly high pitched. He choked on food. His body was failing him and doctors didn’t know why. Every day, a little more of Daniel slipped away.  He would eventually lose the ability to talk and he became completely immobile. Daniel died on Valentine’s Day 2019 at the age of 24. 

Before Daniel became sick, he had this deep and hearty laugh. He had an awesome sense of humor. Daniel had a smile that just beamed from the inside of his soul out. He was always happy and naturally saw the bright side in every situation. In Daniel’s mind, the world was full of joyful opportunity. He was athletic, a skateboarder, a runner, and a diver. But what Daniel loved most was snowboarding. Daniel wasn’t very talkative. He was a much better listener. He knew how to listen deeply and he heard things you didn’t say. He just understood the subtle fears people carry. He was compassionate and empathetic. You could feel his warmth just standing next to him. One of the things we loved most about Daniel, was how inclusive and welcoming he was. Daniel didn’t know a stranger. He embraced everyone. He had a way of making anyone and everyone feel special, loved, like you were his best friend.

In a search for diagnosis and cure, Daniel would have more than 700 blood tests, 12 MRI’s, 4 PET scans, 10 CT scans, 5 Spinal taps, 6 ultrasounds, 2 EMG’s, 5 EEG’s, 3 EKG’s, 2 echocardiograms, 2 Skin biopsies, a muscle biopsy and full genetic testing.  He was seen by top neurologists at Johns Hopkins, Boston Mass, Columbia Presbyterian, Mayo Clinic and NIH Undiagnosed Diseases. We didn’t find out Daniel had CJD until after his death. 6 ½ years living with CJD is one of the longest on record.  Most people only live a few months.

We are sponsoring a Strides for CJD walk in Virginia because we want to educate people about this disease and we need to help find a cure.