Janet’s fight against Autoimmune Encephalitis

At the end of January this year my mother Janet suddenly lost her short term memory. It came on rapidly and she couldn’t retain anything  for more than a minute. Initially everyone thought she might of had some type of stroke but luckily her primary doctor sent her to St. Clare in Fenton. They had a specialist who was able to catch that my mom had something very rare...:Limbic encephalitis. My mother’s brain was swollen. We were told the special medication would fix her up in a couple of weeks. 

We’re now at the end of April and my mother has rapidly declined. She is now a patient with a specialist at Washington University and had her diagnosis changed to Autoimmune Encephalitis.  Her short term memory is about two minutes before she forgets anything you’ve said. She also is having severe issues with her long term memory. She’ll have moments of sheer confusion and reality mixes with dreams.  Sometimes she forgets she has grandchildren or even who my Dad is. She has forgotten who she is as well. Other times she’ll be sharp for a hour or so. 


My mother has burned through her vacation, leave and sick days. We’ve been waiting for paperwork to be pushed thorough for donated paid days. We’re looking into medically retiring mom if the new treatment fails. My Dad has stayed with my Mom and cancelled all of his work for spring which means no paychecks. 

I’ve  taken on a few of the bills however the copays are rapidly adding up and my mom has been the hospital four times. Our next step is a medication that is $12,000 each dose. I hate asking but we’re at a point where we’re backed into a corner. I set this go fund me for $5,000.  All we want to do is pay the thousands of dollars of copays off and make sure my parents can comfortably be able to get groceries.  We’re super hopeful this next round of treatment will bring us our Mom back. There is nothing more than I want than to have our lives go back to normal. 

We’re extremely thankful for everyone’s kind thoughts and prayers. It means so much to us that my Mom is so loved.