When Daniel, my eldest son, was eventually diagnosed with a craniopharyngioma in December 1991, there was nothing to prepare us for the devastation that was to follow. My relief that at last there was a “reason/explanation/diagnosis” of what had been a long history of headaches, unexplained weight gain, poor growth, and several years of being labelled “an over anxious mother” while I watched my son suffer, was short-lived. I stood outside the children’s hospital where he was eventually diagnosed, and looked across to the maternity hospital where he was born, and a feeling of déjà vu overwhelmed me. Only this time my whole world would crumble.

As Daniel had also been diagnosed with secondary hydrocephalus, he needed an operation to insert a shunt, in order to drain the excessive fluid from around his brain. As Daniel recovered from this first operation I had, for the first time, a glimpse of Daniel without the headaches and illness that had plagued him for so long and, for a short while, I believed that Daniel would “get better” and that his life would improve. We “celebrated Christmas” a little differently that year, and as we “prepared” for his craniotomy I continued to expect Daniel to make a “full recovery”. Little did I know that this really was the beginning of a nightmare …