Help my family in this devastating time

Hello, my name is Catie. Yesterday my brother, Cameron, was preliminarily diagnosed with Creutzfieldt-Jakobs Disease (CJD). He has been having neurological symptoms starting at least four weeks ago. It started with muscle weakness, headaches, and vomiting. It then quickly worsened to delayed, slurred speech, and involuntary muscle movements. He is now having nightly hallucinations along with significant behavioral changes. Per the neurologist, all of these symptoms along with the brain MRI are considered “classic symptoms” of sporadic CJD. The neurologist has stated she is sure this is what it is, but we are waiting on a lumbar puncture to confirm. This disease has an extremely rapid progression and is terminal. It is considered very rare and most people diagnosed only survive 6 months after onset, but they develop dementia so we don’t know how long he will even be coherent. My mom and I have watched Cameron quickly decline and it has been absolutely devastating. He was originally misdiagnosed which is very common with this disease. We’ve been in and out of the hospital for a month trying to get answers. My mother has already missed a lot of work. Cameron is in the hospital now, and the advice we’ve been given is to just spend time with him and love on him now, because we don’t know when the dementia will take over. We are praying for a miracle and that they got this wrong. But, in the mean time, I want my mom to not have to worry about work and to be able to be with her son. Anything you can contribute is meaningful, whether it is praying, sharing, or donating. Thank you for your support during this difficult time.

UPDATE:

Wow. I have no words. I am incredibly touched by the amount of love and donations we have received. This is a such a devastating situation to be in. It makes me feel the tiniest bit better my mom is able to take time off of work, all thanks to you guys. Please keep sending your prayers up!! We are holding on to that one little bit of hope these doctors got it wrong. We are having more eyes on his case. We just can’t believe it. We’re refusing to believe it. Cameron went for his Lumbar puncture about 30 minutes ago. We won’t receive the results for up to 3 weeks. I am going to raise the goal amount since we already passed it❤️‍ Thank you all so much so so much. My words could never amount to how thankful we are. My brother is a fighter and he will fight this thing to the end!!! One thing I know is true is God created our bodies, he can heal them too!!!! Prayers. God Bless.

UPDATE 2:

My brother has been at Emory now for a little over a week. They have ran their own tests and have watched over my brother closely. Last Saturday the team of neurologist sat down with my family and gave us the unbearable news yet again for the second time that my brother has CJD. Because my brother is so young and healthy Dr. Greene wanted to try everything possible so he offered to do a round of steroid treatment on the one percent chance that this is an auto immune disease mimicking CJD although they believe it is CJD. That night we started the steroids, and that next day was the absolute worst day we have had since this started so as a family the next morning, my brother included, we decided to stop the steroid treatment. At that time my brother was verbal. By the end of that night, my brother had completely gone nonverbal and in the next couple of days he declined a lot more rapidly. He is now no longer able to use the bathroom on his own or communicate to us about anything. He isn’t able to get out of the bed. He takes a couple of bites of food and sips of a drink here and there. The doctor and the palliative care team have talked with us a couple of times and both times they have said that he can go to the hospice floor at Emory but by the end of the week because he is not in pain and on pain medication and anxiety medication that they believe a nursing home or him coming home with us would be the best option. The nursing home is out of the question so he will be coming home with my mom and I. We will be his full-time caretakers with the help of part time hospice until this disease naturally takes its course. We will be with Cameron until the end.

update again. We never made it to home hospice. Cameron was moved to the hospice at Emory. As much as we want him home he is declining more quickly and a big move isn’t an option anymore. This will be the last update I do. Im sitting at his bedside listening to him gurgle and struggle to breathe.

Thank you all for reading, sharing and donating. Please God wrap your arms around my family and give us the strength we need to continue to make it through.

08.03.1990-07.25.2023

my brother passed away with all of us surrounding him.