My 24 year old daughter Kari was a bright, happy, loving, beautiful young lady with a contagious smile and laugh that brought joy to anyone who was around her. She had found a new church that she loved and was very involved with the group of young adults. She had a great part time job taking pictures of the newborns at the local hospital and even purchased her own house with the assistance of a program that helps people with disabilities. She was creating awareness and fundraising for families with kids that had an incurable brain cancer called DIPG that is 100% fatal. Then in September 2017 she was diagnosed with a rare form of encephalitis called NMDA receptor antibody encephalitis that changed her and our lives forever.
She is 24/7 care. The encephalitis has taken away my daughter, her personality has changed, her speech and cognition are impaired. She has double vision and nystagmus or involuntary movement of her eyes. Her emotions are crazy, anger and rage one minute with cussing to crying and apologizing the next. She’s uninhibited, impulsive, frustrated, and wants to die at times. She has insomnia and has to take medicines to sleep. She talks nonstop about everything or nothing. Her long term memories for several years are gone and her short term memory is impaired to where she doesn’t remember things that happened hours or days prior. She has OCD and it has come back so much worse and takes up hours of our day. Her mobility is limited and she has no coordination. She can’t even feed herself, scratch an itch, hold a cup or water bottle, operate her phone, or use the bathroom on her own. She shakes like someone with Parkinson’s. She has not walked on her own in over a year. She is able to walk with a specialized walker that we received from a donor but for short periods and with a lot of assistance because of the coordination. She also has severe nerve pain and itch around the trunk of her body and they have not been able to get it under control or figure out why. This is one of the worst things because she is in so much pain she can’t enjoy anything and it makes it hard to do therapy.
I am her advocate and have researched, given ideas to the doctors, and even took her to PA twice to see the doctor that discovered and named this type of encephalitis. I’ve changed her diet, I’m using vitamins and seeking other natural healing products. She was accepted into the Undiagnosed Disease Network run by the National Institute of Health which we went to for a week in December.
We have started this fundraiser to help with Kari’s needs and to hopefully get to the right doctors to find a cure so she can live a normal life, whatever that may be. Family and friends have been helping out but it is a strain for all of us. These are some of the things that we need help with. The cost of trips to Pennsylvania and Duke, the extra medical cost that insurance won’t pay, the ongoing needs and supplies for Kari, her dietary needs since we have gone all natural are expensive, her Sarna lotion used for the pain and itch is $10 a bottle and we go through around 4 a week. Also, there are clinical trials and new treatments that may help her but insurance won’t pay for. One is located in Florida and is promising for her coordination isssues. Another is a hyperbaric oxygen chamber. This would mean traveling for weeks and maybe even purchasing one for home if there are improvements. We are checking into specialized rehabs that deal with brain injury and they are not close to home. The cost of traveling there and staying with her is going to be expensive. We need ramps built to help get her in and out of the house, parallel bars to help her walk, a roll in shower so she can have more than a bed bath, a stair lift chair to get her upstairs at her house, a bathroom door widened, a lift for her tilting wheelchair for the back of the vehicle, etc. There are three of us caring for her 24/7 (her dad, his girlfriend, and I). We are all unable to work because of the full time care needed for her and our own disabilities. I have Crohns, was diagnosed in March with cancer, and went through radiation and chemo. We are pretty sure her dad has had a minor stroke, can barely walk without a cane, and has other health issues. Her dad’s girlfriend has heart issues. Since none of us are able to work, it has made it difficult to keep up the bills and things needed for two households. Kari’s Dad and his girlfriend stay at her house to care for her there, then she comes back to my house for me to take care of her. We share the load but stay exhausted and need some respite care.
Her complicated medical history goes back 10 years which started with a stroke at age 14. She has been in and out of the hospital every since with various flares. Her Duke doctors have diagnosed her with three rare autoimmune diseases, CNS Vasculitis, a Granulomatosis disease, and now the encephalitis. The doctors say this just doesn’t happen and think it is probably one thing but it has not been discovered or named yet. They have not been able to find a way to put any of it in remission.
The encephalitis has been the most debilitating and she is 24/7 care. There is an 80% full recovery rate with treatment but it is a long and hard road with an average rehabilitation time of at least two years, sometimes more. She was catatonic for two months after diagnosis. Then with treatment she started becoming more aware and moving around. By January she was able to feed herself and doing pretty good. Then she relapsed in February and hasn’t gotten back to where she was. There is a 25% chance of relapse with this disease.
This is a little bit more about Kari before her diagnosis with the encephalitis. She worked for Best Buy in cameras for 3 years and this is when she discovered her love of photography. She missed a lot of high school due to her illnesses but graduated with her class on the A/B honor roll. She tried college for photography but had to withdraw because of a flare with her Vasculitis. She then tried college again for radiology because of all the time spent in the hospital. She had to withdraw again because of another flare that kept her in the hospital for 3 weeks. Along with her job that she had to take leave from in May 2017, she had also started her own photography business and was doing newborn, kids, family, and animal photo shoots. Due to all the illnesses, she has never had a boyfriend or been able to do the things her friends have done after high school. Everything she has been through in the past, she has had a smile, bubbly personality, been an inspiration to her friends, and kept her faith in God. This time is so different, there’s no joy, only pain and anguish.
Below you will find more details about her medical history.
After her stroke in 2008 she had a flare in May 2011 and was sent to Duke. After a lot of testing they diagnosed her with CNS Vasculitis and started treatment of Cytoxan and Cellcept. She was good for a while then had a flare in September 2012 and they restarted the treatment over. Things were okay until April 2014 when they discovered she had lesions in her liver, lungs, spleen, kidneys, brain, and spine. They thought it was some type of infection and she had 5 hospital stays that year. They did tons of tests, imaging, biopsies of the lesions, and couldn’t find an infection. They tried finding different diagnosis’s but none of them fit. Kari was not textbook. They sent pathology out and there was something wrong but no one knew what. They even took her stuff to several conventions and no one had answers. The doctors said she was an enigma wrapped in a conundrum, sprinkled with mystery sauce. The lung biopsy was sent to a top specialist in Denver and he said it looked like something genetic. The pulmonologist and surgeon that did the lung biopsy said they had never seen a lung that color or the way the nodules looked. Her lungs from the X-ray looked like she had TB. They finally decided to call it a granulomatous disease but even the granulomas didn’t follow the textbooks. They started a new treatment of Sirolimus and monthly Solumedrol/steroid infusions and she got better. They switched her to Remicade in 2016. Then in January 2017 she had balance and double vision issues. Imaging showed more lesions in the brain and spine. They went to Solumedrol weekly but nothing was helping. She was then admitted to the local hospital in August and given 5 days of Solumedrol to see if that would help with the lesions and Duke ordered a test for the NMDA encephalitis. They decided to try Rituximab in September for the lesions before we got the positive results from the encephalitis. Things went downhill and she was catatonic and had a couple seizures. She was again admitted to the local hospital and they found the positive results for the encephalitis. They transferred her to Duke for a month. She got Plasmapheresis, another dose of Rituximab, and two doses of Cytoxan. She started showing progress in December and was doing somewhat better then relapsed in February. Things got worse. They did Plasmapheresis again and another treatment of Rituximab. Things were not getting better. In May she had a fever of 103.9 was admitted to the local hospital, had a seizure that put her on a ventilator and was airlifted to Duke. They started a new treatment of Tociluzimab. She was sent home after 2 weeks then ended up back at the local hospital within a week because her oxygen levels were dropping. The granulomatosis was back in her lungs and looked like TB again. She was admitted to the local hospital and given 5 days Solumedrol and she stabilized but no real improvement. We went back to UPenn and Duke and they decided to do Cytoxan again. She started the Cytoxan again in July and will do this monthly for 6 months. We are hopeful that this will work again even though it’s a rough chemo medicine. After her first dose of Cytoxan which was a really high dose, she ended up back in the local hospital in August with a high fever, very low white and red blood cell count. She had to have blood transfusions and her liver levels started skyrocketing. They sent her back to Duke because of the liver issues. They put her on high powered IV antibiotics and tested her for infections. They never found anything but she got better and they sent her home. Things have stabilized medically but there has been little improvement in her physical or mental status.