Eight weeks ago our family began a frightening and confusing journey when our mom, Carol, suddenly developed severe insomnia and other unexplained health symptoms. After weeks of searching for answers and multiple hospital visits, doctors finally discovered the cause.
That MRI changed everything.
Carol was diagnosed with Creutzfeldt-Jakob Disease (CJD), an extremely rare neurological disorder that affects roughly one in a million people. Even more rare is the form Carol has, where the disease first presents with severe insomnia. Because of how unusual this presentation is, it can be incredibly difficult to recognize early.
CJD progresses rapidly and leads to severe neurological decline. There is very little known about the disease, and timelines can vary greatly. Doctors have told us it may be weeks or possibly a few months. Right now, we simply do not know how much time we have left with her.
At this point, our focus has shifted to making her as comfortable as possible and allowing her to spend her remaining time surrounded by the people who love her most. Carol is now home receiving hospice care, where she can be with her family during this time.
Many of you may have already noticed Carol’s absence over the past several weeks. Whether it was on the pickleball courts, at a campsite, or seeing her at church; or you remember her during her tenure as a Spanish teacher at Rincon Valley Middle School-Carol has always been someone who stayed active and deeply connected to the people and community around her. She is a devoted wife to her husband Mike of 36 years, a loving mother, and a proud “Bama” — the name her grandchildren lovingly call her instead of grandma. Being Bama is one of the roles she cherishes most, and her warmth, strength, and love have touched so many lives.
If you’ve shared a pickleball court, a campsite, a church pew, or even a simple conversation with Carol, you know the kindness, warmth, and strength she brings into the lives of the people around her.
While we are incredibly grateful to have her home with us, this also brings unexpected challenges. Caring for her safely requires around-the-clock care, and the medical needs have created a financial burden our family never could have anticipated.
We are asking our friends, family, and community for support during this incredibly heartbreaking time. Any donation will help ease the financial strain so Mike can focus on spending these precious moments with his wife of 36 years.
Most of all, we ask for your prayers, love, and support for our family.
To her grandchildren she is “Bama,” to Mike she is his partner of 36 years, and to all of us she is the heart of our family. Our greatest hope now is to surround her with love, comfort, and peace in the time we have left together.