The truth is, five years on, my grief has come back loud and screaming. My heart, in fact my whole body, is aching for Sam. ❤️ So firstly, thank you for sticking with me. And I hope you'll bear with me while I've needed to take a little time out, for me and for Sam.

I never imagined that when Sam was born so healthy and perfect, that just over five years later I would be arranging his funeral.

Families Driven By Love: Three UK NORSE & FIRES Families United by Loss and a Determination to Create Change attend the Epilepsy Research Institutes Supporters Reception where they announced their 11 new research investments for 2026/27

Rachel shares Sam’s story and highlights ways to stand alongside families affected by this rare epilepsy syndrome.