Debbie’s story

I lost my beautiful son George in January 2017. He was 19. When George passed away, I felt completely lost. A constant flow of people used to come to our house, I would be arranging appointments and juggling lots of things and suddenly it all stopped. It was very isolating, and I felt like I had to work out my purpose in life having cared for George for so many years. I had the worry of how I would afford George’s funeral, having to sort out all the paperwork and inform all the services we had relied on for so many years.

I also found that friends and family often struggle to know how to support you, and many worry about saying the wrong thing. Over time this led me to talk to the team at Dravet Syndrome UK about the need for a support network for bereaved families and a safe space for them to connect, share stories, and feel understood. This was when we set up the Dravet Syndrome Bereavement forum, a private Facebook group run jointly between Dravet Syndrome UK and US Dravet Syndrome Foundation, and I became actively involved in running it. This group includes around 40 families, who all share the experience of having lost a child. It is a safe space for them to talk, ask questions and gain support.

Creating a safe space for sharing memories

One of the most meaningful aspects of the forum is how it allows families to keep their children’s memories alive. I’ve introduced initiatives like Fun Friday Memories, where families share funny or special moments about their children. These posts bring smiles and laughter, even in the midst of grief. For me, sharing memories of George has helped me reflect on his life in new ways.

I also make it a priority to reach out to families who have recently lost a child. Sometimes it’s just a private message offering support or an introduction to the forum. These connections are really important – not just for them but for me as well. Knowing that I’ve been able to offer even a small amount of comfort during such an unimaginable time brings me a sense of fulfilment. It’s a way of honouring George’s memory while helping others navigate their own grief.

One final gift

Grief is so personal, and I’ve seen firsthand how it affects people so differently – even within my own family. My oldest children have coped in ways that are entirely different from my youngest son, and my own approach has evolved over time.

I trained for three years at Great Ormond Street Hospital and then worked on the neurological ward there. I went on to work for a short time at Haven House Childrens Hospice, before joining a community nursing team as a health visitor. I think my time caring for George has meant that when I meet families through my work and I can quickly get a sense of how they are feeling and the best ways to support them. Having been in their exact position previously and I know what it feels like so can use that lived experience to help other families.

New chapter

My son and his wife adopted my granddaughter last July, so it’s been almost a year now. This past Christmas was our first one with her. Honestly, we had all grown to dread Christmas after George passed away and my Mum also passed a few months after George, which made things even harder.
But now we have this incredible little girl with a personality that’s larger than life. She’s full of joy and always joking around. She’s fitted into our family so naturally—it really feels like it was meant to be. She has truly brought new life and light back into all of us.