Tracye Deese was our mother. She was beautiful and full of life. Tracye was the best mother, sister, wife, aunt and friend. She had 3 kids - Chris, Catherine and Kimberly.
My sibilings and I were blessed to have her as our mother. She was such a fun mom. We were always laughing and joking around. At the same time, she made sure that we always knew we could come to her about anything including our friends.
Unfortunately, 2021 would change our lives forever. Earlier in that year, Ma would say things like "my memory feels off" or would want to keep going over important information in the event of her or our father's death. June 2021 everything got worse. She had a difficult time with her balance, she needed help to use her cellphone and utensils. My sister took her to the hospital and little did we know the litter of tests that would come.
In the hospital, there were so many blood tests and brain scans. Then the lesions appeared. So, the doctors decided to do a spinal tap for further diagnosis. Unfortunately, they did not know what was going on and stated that it would take weeks to get the results of her tests. After a short hospital stay, Ma was released to go back home. We were doing our own research but that did not lead to any answers.
I traveled back home while my sister stayed with Ma. Two days after returning home, my sister called me saying I need to get back now and that something was wrong. We decided to wait a few days to see how Ma progressed but she ended up back in the hospital. At this time, a neurologist attended to her. While our Aunt was visiting, she mentioned that Ma had a cornea transplant. That's when the possiblity that all of Ma's symptoms could be caused by CJD. The doctors did another spinal tap and sent the samples to the Mayo Clinic. We were left to wait and pray.
Ma's symptoms progressed quickly. When I returned and entered the hospital room, Ma did not know who I was. After saying my name several times, she remembered me. Afterwards, my sister explained to me how bad things had gotten. We were in the hospital for a few days and Ma continued to get worse. She would barely talk, could not walk, needed help eating and started having difficulty swallowing. Then our worst fears were confirmed; Ma had CJD.
On August 10th, 2021, Ma passed away. Our lives will never be the same. CJD is a vicious disease and more research is needed to help others.
Ma was a guiding light to all who crossed paths with her so we decided to name our team; Tracye's Fireflies. We would like for you to join us in Fairfax on September 29 and/or if you could donate to the CJD foundation.
#Tracye'sFireflies
