Nami started not feeling herself at the end of April. After multiple doctors visits and consultations, she was discharged from the hospital on June 5 with a probable diagnosis of sporadic Creutzfeldt-Jakob disease. A rare neurological disease that affects less than 500 people annually, it progresses quickly and there is no cure or treatment. The prion mutation forms at random, and there is nothing preventative that could have been done. About two weeks later, the results of her lumbar puncture came back confirming the diagnosis. 

We spent the time we had making her comfortable and doing her favorite things. Sadly, only 19 days after being discharged, Nami died in the comfort of her own home with her husband and daughter by her side. 

There is still much unknown about this rare disease, and so we opted to donate Nami's brain for autopsy in hopes of preventing another family from experiencing this tragedy. The CJD Foundation has provided significant information and understanding.