‘It destroys you watching them suffer’: Parents make superhero move for Sydney sisters born with ‘ultra rare’ genetic disease PGAP1-CDG

At least a handful of times a year, unpredictable seizures overcome two young Sydney sisters and cut off their airways.

Every moment matters in their parents’ subsequent scramble for an ambulance, because Mary, 14, and Neveah Taouk, 10, are both largely resistant to anti-epileptic drugs.

This is…