When her children’s eyesight suddenly deteriorated and they began reading books very closely, Margreet, 45, took them to an optician. What initially appeared to be an eye disorder was later found to be a metabolic disease.

Her daughter and two sons, aged nine, 10 and five, died from the disease over a period of three years, leaving Margreet in what she described as an unending roller coaster without seat belts.