By Diana Magnay, CNN
Brussels, Belgium (CNN) - As little Ella-Louise faded away, her tiny, frail body wracked with pain, her heartbroken mother was left to look on, feeling powerless.
Linda van Roy says she could do nothing to help her terminally ill baby in the last hours of her life.
"In that period they tell you it's best not to give any fluids because babies survive on little drops of liquid," she says. "So we stopped feeding her. In the end it was bones and skin and no more baby left."
Ten-month-old Ella-Louise died two years ago after suffering from Krabbe disease - a rare and terminal genetic mutation which damages the nervous system.