A lot like grief.
Bromwich
Lee
L
D000223:Adaptation, Psychological; D000786:Anger; D001260:Ataxia Telangiectasia / Q000175:diagnosis* / Q000235:genetics; D001294:Attitude to Health; D002675:Child, Preschool; D003717:Denial, Psychological; D006117:Grief; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D035583:Rare Diseases