Lainey's Medical Bills
This is Lainey, she is my beautiful teenage daughter. She is strong willed and very determined. Enjoying choir at school, animals, the outdoors and her family. She even broke her own horse in order to ride it. This December at the age of 17 she woke up a different girl. On December 29, 2014, our lives were forever changed. Lainey woke up hallucinating, confused and not herself. Within 3 days she lost all skills to eat, drink, get dressed and in general function like a normal teen. Our hometown doctors had no idea what was wrong after double ER visits and multiple tests. On January 1, 2015 we met the team at Children's Mercy that diagnosed her with Anti NMDA Receptor Encephalitis and started treatments. We have been hospitalized since that day, under going a very slow recovery process full of good and bad days. Our next step before home will be a outpatient facility for her care in Paola, KS. Our doctors are pushing but normally MO Medicaide does not pay for this since it is out of state.
We are asking for help in spreading her message. We appreciate any help that is offered, including continued prayers. Any additional donations that are not used will be donated back to those organizations that have helped us. Thank you all!
This is information on her illness as not many know what it is: Anti-NMDA (N-methyl D-aspartate) receptor antibody encephalitis, also termed NMDA receptor antibody encephalitis, is an acute form of encephalitis which is potentially lethal but has high probability for recovery. It is caused by an autoimmune reaction primarily against the NR1 subunit of the NMDA receptor.[1] Different descriptions and syndromal designations for this disease existed in medical literature prior to 2007 but it was then that the disease was officially categorized and named by Dalmau and colleagues.[2]
Movement disorder relapses after herpes simplex virus 1 (HSV1) encephalitis have been hypothesized to be secondary to postviral autoimmunity. Recently, a proportion of patients with HSV1 encephalitis (HSE) were shown to produce autoantibodies against N-methyl-D-aspartate receptor (NMDAR).[3]
The condition is associated with tumours, mostly teratomas of the ovaries, and is thus considered a paraneoplastic syndrome. However, there are a substantial number of cases with no detectable tumour and in fact it is emerging that most cases do not have tumour.[4] This is an especially important point as the search for a tumour should not occupy attention when immune treatments are being planned.
