Beatrix, our beautiful, sceptical daughter, died November 2018 at 9.5 months old. She had a very rare and incurable kidney condition and died due to unforeseen complications after a routine operation. 

After Beatrix diagnosis, when she was 1 week old, we knew her life would be difficult and very different to what we had envisioned, but never did I think she would die, especially not after she got through her initial ICU stay at Great Ormond Street Hospital.

In October 2018, a routine operation went wrong, and she suffered severe brain damage. After another harrowing month on the ICU, we brought her home to die. Nothing can ever prepare you for watching your own child take her last breath. The trauma, emotional - and sometimes also physical - pain and ongoing despair is not something I can truly capture in words. 

And I quickly realised that no one really understands it, unless they have
experienced it themselves. Not our closest friends, not our parents or family, not well-meaning neighbours or nursery parents, not grief counsellors or palliative care staff. 

SLOW is a group of bereaved parents who meet up to support one another - making sense of this new world, this new existence without your child in it. It has been extremely helpful in the darkness of grief to speak to others further down the grief journey, to hear how they cope, how they honour their dead children. As most charities, their funding has taken a hit. Yet their help is so important and I want to support the ongoing work of SLOW.