Hard Choices? Expletive deleted

When is the right moment to tell someone the might die from SUDEP?  Our Jane, like many people living with epilepsy was never told.  We, as parents were never told.  If you read the stories of parents, siblings, grandparents, frields and whoever, then historically no-one was told.

Not telling was, and where it still exists a conspiracy of silence that will condemn people to death where knowledge and awareness MAY have avoided such a death.  Silence is no longer an option.