Jesse's story

Jesse Nixon Full Story Quote

I wish you knew how comforting and invaluable bereavement support groups are. In my opinion, it’s one of the most important things EACH provides. That aftercare is just as important as end of life support. It goes on forever. It’s never ending and something we, as a family, will always be grateful for.

My son, Otis, was born in January 2020. I’d gone full term, but with reduced movement, and when he arrived he wasn’t breathing. He spent his whole life on a ventilator and was soon diagnosed with type zero Spinal Muscular Atrophy (SMA).


It was at that point we were referred to EACH and transferred to The Nook. Otis was taken off life-support and, very sadly, died on 28th February, after just 30 days. We stayed at the hospice for a short time and then benefitted from counselling and bereavement groups, as well as sibling support for our eldest son, Marlo.

The groups were particularly important and completely invaluable to us. I’m not sure anything else would have worked so effectively, in terms of helping navigate our grief. It was a safe space where we could be completely open and they allowed us to manage our grief with a clear mind, or as clear a mind as possible.

It made our grief feel validated. Everyone grieves differently but I didn’t fully appreciate that beforehand. It was only by speaking to other parents that I realised everyone has their own way of coping and that knowledge made me feel more secure, in terms of my own grief process.

The groups felt like a community. Of course, it was a horrible club that no-one wanted to join. However, it was a way of making the best of our situation. It wasn’t just about sharing sadness – it was also about sharing joy and nothing was taboo. We could talk about our son in a joyful way. As ridiculous as it sounds, we’d laugh about things and there were light moments amid the sadness.

It was lovely being somewhere no-one passed judgement and that opened my eyes to a completely different world. I realised we weren’t the only ones going through this awful thing. It wasn’t just my family affected and I realised that struggling to come to terms with things was normal. It was ok to express every single emotion that goes with child loss - not just sadness - and that felt very important.

As a family, we all benefited. My husband got to speak to other dads and Marlo was able to make friends with other brothers and sisters. He still knows what a special place The Nook is and that it’s somewhere he can connect with Otis.

It wasn’t just the groups that made a difference. At the very beginning, during our time at The Nook, we couldn’t even look after ourselves, let alone anyone else. We had meals cooked for us and there was someone there to help us with Marlo.

Being able to have Otis there with us after he’d passed was also very helpful, in terms of us coming to terms with things. It meant we didn’t have to rush into anything and could take our time adjusting. The staff were so accepting and even after we’d returned home, they were always on the other end of a phone. EACH’s support every step of the way was an absolute lifeline.

Jesse Nixon, Otis’ mum

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