One mother reflects on her daughter Emmy’s life, paediatric palliative care, and the support families need from the very beginning. My daughter Emmy was born in 1991. She had been epileptic in the womb, something we would only discover years later. She was profoundly and complexly disabled and spent the first 14 months of her life in hospital. When she came home, we were completely untrained and had little support. We had been told she was unlikely to survive her first year, yet nobody seemed to ask how we were going to manage. When Emmy was about four, we were introduced to Helen House, the first children’s hospice in the world. It became our place of safety and our first experience of paediatric palliative care. It taught us that palliative care isn’t just about end-of-life care. It is whole-life care. We were seen and heard as a family, and we could practise parenting, not just caring. Years later, I still wonder what difference it would have made if someone had asked us, right at the beginning: “What support would be good for you?” Families need more than sympathy. They need someone to help them navigate an incredibly complex world — from the very beginning, not when the first crisis happens.   Read her full story on the ICPCN website: icpcn.org/stories/