Walking into my son’s room, I leant down to give him a kiss.
But instead of walking over plastic toys and pieces of LEGO scattered over the carpet, Isaac had medical equipment like oxygen tanks, a suction machine, feeding equipment and a wheelchair dominating much of the room – all vital for keeping him alive.
You see, Isaac has an extremely rare form of epilepsy – which meant he fitted 80 times a day.
Because of this, Isaac is sedated throughout the night to prevent fits in his sleep.
Without it, he could pass away in the night.
Careful not to knock his seizure alert device, I tucked him in and went to bed.
But I wouldn’t be in for a peaceful night’s sleep – Isaac’s sedatives only lasted for three to four hours a time, so I had to continually get up in the night to administer more sedatives.
