if you fall asleep you die!

I just read an interesting news article about a boy who has a condition called central hypoventilation syndrome. Children with this condition breathe normally in waking hours but when they fall asleep they can stop breathing and die. It is a genetic condition and from what I have read can be familial.
Children need mechanical ventilation at night from a respirator to prevent hypoxemic events.
I cannot imagine how stressful and scary this would be for his parents. His mother talks about how she has to watch him constantly to make sure he doesnt doze off or nap, such as during long car rides. He also has a permanent tracheotomy to connect his respirator too at night.
From further reading I have discovered it is a relatively rare disease and and can be misdiagnosed. Infants with this disorder may die in their sleep and be written off as sids.
If not diagnosed early enough cumulative hypoxic events may lead to seizure disorders or other disabilities.
They have done numerous studies and have not been able to pinpoint a definitive area of the brain that is abnormal or diseased. From studies they have deduced that the problem lies in the brainstem where input from chemoreceptors is integrated.
Interestingly these children must also be careful while swimming underwater or diving because the do not sense air hunger, and they can lose consciousness and drown as a result.