In June of 2018, my daughter Kearin was sent to the emergency room with what we believed were psychological problems. She did not return home until four months later.
Originally she was admitted to Christiana Hospital in Delaware for five days. The medical team who was treating her at this regional hospital were unable to determine a diagnosis. Kearin experienced a rapid decline into a catatonic state and rigor. This compelled us to transfer her to Jefferson Hospital in Philadelphia, Pennsylvania.
Kearin had a medical team that included infectious disease, neurology, and psychology. Kearin was tested at this facility, and after a five day stay, they were unable to find an answer to Kearin's state. By this point Kearin had undergone several cat-scans, MRIs, and x-rays. All medical results at this point were negative and inconclusive.
Kearin continued to exhibit behavior that was similar to that of a possessed person. For nearly three months, Kearin would have issues with basic tasks like drinking water, was unable to communicate, exhibited no short-term memory, was unable to get dressed on her own, and was unable to go to the bathroom on her own and had to use a catheter. She also exhibited dangerous behaviors, called "storming events" which could occur up to six times a day. She was uncontrollable and attempted to physically hit staff and family members. She also exhibited signs of hallucinations and paranoia. Additionally she was able to wriggle out of her bed restraints and pull out her feeding tube, and then attempted to escape the hospital, only to be stopped by locked doors and dead ends. This gofundme picture shows Kearin hooked up to an EEG, an IV, heart monitors, a feeding tube, and wearing wrist braces to secure her to the bed. Due to this ongoing behavior and rapid decline, we feared the worst for our daughter.
With our child writhing and screaming in pain and in fugue states, we made the decision to transfer Kearin to UPenn medical campus on June 28th 2018. After conducting research as a family, we believed she could have a rare virus called: Anti-NMDA Receptor Encephalitis. The only way to determine this disease was for Kearin to undergo a spinal tap. UPenn was the medical facility that had originally discovered the Anti-NMDA Receptor Encephalitis eleven years prior. In the United States, there are about 1,000 diagnosed cases of Anti-NMDA Receptor Encephalitis per year. With UPenn's expertise with this disease they were able to confirm this diagnosis with the results from Kearin's spinal tap. Kearin's treatment required teams of doctors, nurses, and a 24/7 CNA (certified nursing assistant).
After four months in various hospitals, Kearin is now in an intensive out-patient therapy, and will continue this treatment for at least one year. We are overjoyed to have our daughter back at home, but we do need to ask for help to afford her medical bills and continuing treatment expenses. As part of her treatment, Kearin has had to use very expensive medications, some of which cost $15,000 per IV bottle. So far Kearin has used at least 6 of these IV bottles, and may need to undergo this process again in the future. She has also undergone chemotherapy, steroids, as well as an assortment of other medications throughout her medical journey.
Previous to this diagnosis, Kearin had just completed her freshman year at NYU as a film major. Now that she is recovering from Anti-NMDA Receptor Encephalitis, at the very least she is going to miss her entire sophomore year at NYU. We are hoping she will be recovered enough to return to NYU for the fall semester of 2019. In the meantime she will be attending ongoing speech therapy, cognitive therapy, and psychological therapy. She is also looking to attend a program in Boston that assists people with brain injuries to gradually return to school. Kearin wants nothing more than to go back to school and return to her film major at her dream school of NYU, which has been her life-long goal.
Due to her four month hospital stay and the need for intensive ongoing treatment, we need to ask for financial assistance from our family, friends, and community. If you are able to, please consider donating to Kearin's medical bill fund to help Kearin continue to improve and eventually return to her normal life.