Our Mom’s Story
In the spring of 2025, our mom heard the words no family ever wants to hear: Stage 4 metastatic cancer. It was terrifying, but she met it with grit. There was a treatment plan, a roadmap. We believed she would fight—and win.
Not long after, new symptoms began to appear: brain fog, muscle fatigue, and insomnia. Because she had only recently been diagnosed with cancer and had just started treatments, doctors believed the changes were either signs of the illness itself or side effects of the medications. The overlap created confusion and delayed answers. Through it all, she remained committed to living her life fully and not missing out. She was encouraged to take her long-planned trip with friends to France and England — a trip she embraced with joy and determination. But soon after returning home, the symptoms sharpened. She was admitted to the hospital with weakness, fatigue, and tremors, only to be discharged with the same explanation — treatment side effects. Within weeks, she was back again, this time facing more severe muscle fatigue, weakness, and spasms
She was admitted on August 11, and from that day on, our mom never left the hospital.
Because of her fog and confusion, doctors ordered a brain MRI. For a moment, it looked like a small stroke—but as her cognition declined, that theory didn’t fit. Days went by with few answers and growing fear. As her tremors worsened and her muscles stiffened, the neurology team narrowed the possibilities to paraneoplastic syndrome (a complication sometimes linked to cancer and often treatable) or Creutzfeldt–Jakob disease (CJD), a very rare and fatal brain disease. We prayed for the lesser of two evils.
Our mom’s decline quickened. She began to lose movement in her arms and legs. Speech faded until we relied on eyebrow raises, a scrunched nose, and the occasional one-word reply. We turned to music and art to keep her spirit present—her eyes lit up when a familiar song played, and from somewhere deep and protected, she could still sing a few lines of her favorite Genesis chorus. Those moments were gifts.
We waited for the spinal-fluid test—her samples traveled just across the street to the national prion center, but the two-week wait felt like years. We filled the time with music, doodles, funny movies, and a steady stream of love. Every visit, every goodnight, seemed heavier than the last.
Three weeks after admission, the call came: CJD. In an instant, our conversations shifted from treatment and milestones to comfort and presence. She was moved to hospice for end-of-life care. The emotions ran wild—anger, fear, disbelief, heartbreak. How could a cancer diagnosis end two months later with a fatal, untreatable neurological disease? We wanted answers there just weren’t. This form of CJD was spontaneous. There was no cure to chase.
We stayed by her side as functions slipped away—first movement, then speech, then swallowing. We cherished every small response, not knowing which would be the last. When her breathing changed, the nurses told us time was short. She passed peacefully, and we were with her.
What is CJD—and why your support matters
Creutzfeldt–Jakob disease (CJD) is a rare, rapidly progressive neurodegenerative disease caused by misfolded prion proteins that damage the brain. It’s not cancer, it’s not a virus, and for most people it’s not inherited—it appears spontaneously. Symptoms can include confusion, memory loss, behavior changes, muscle stiffness, tremors, and coordination problems that worsen quickly. Today, there is no cure and no proven treatment that stops the disease. Families, like ours, are left to focus on comfort, dignity, and time together.
We’re sharing our mom’s story to honor her life and to push for change—earlier recognition, better support for families, and research that can lead to real treatments. If you choose to give, you’re helping advance science, educate clinicians, and bring hope to families facing the unthinkable.