Nora Wong
Before her son, Daniel, died, Nora considered herself a stay-at-home mother. Prior to having children, she earned her Ph.D. in psychology at the University of Michigan and worked in corporate survey research.
Daniel died on December 3, 2013 at the age of 22, just months after graduating from Stanford University. The doctors think he had a rare seizure disorder called new onset refractory status epilepticus or NORSE. With NORSE, healthy people are suddenly struck by out-of-the-blue, prolonged seizures for which there is no remedy. It is a new and evolving medical term for a disorder long observed. There is no known cause or established treatment for NORSE. The outcomes of NORSE are grim: roughly a third of the patients die, about a third survive with significant brain deficits and the rest can recover to baseline, but almost all survivors then have epilepsy for the rest of their lives.
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