So i had assumed her behavior at bedtime (being naughty and resisting sleep)
was just due to thinking about the marfans, but no it is even deeper than that!
She has basicly been scared to close her eyes... she says when she closes her eyes it all goes dark... like when someone dies!!!
She is worried she is never going to wake up again!
She is worried she will never see her mummy again!
This is such disturbing news and all i can do is comfort her and reassure her she is not going to die.
I really hope that time will make things easier for the both of us.