“The little moments mean so much to us now”

All Kai’s life we have been told he was life-limited: we knew we wouldn’t have him for long. But no-one really talks about what happens at the end.

Before coming to Chestnut for the end of his life, we’d spent eight months in hospital, and we were living apart a lot of the time. When we got here, we just wanted to be a family again. It is such a relief to be living as a family unit, having meals together. At the hospital, you can’t do that.

Kai with mum Leanne, at Chestnut in summer 2025

Here, we’ve been able to make Kai part of everything. He’s unable to get up out of the bed now and he can’t sit up, but we can lie on the cuddle bed with him, have snuggles and watch movies. It’s been two years since I have been able to sleep by his side, and I feel like I’ve slept better here than I have in a long time. If I’m next to him, I know straight away when something is wrong.

With the cuddle bed, we are close enough for Kai to feel our hearts beat, like a baby does in the womb. Having that closeness at such a significant time has been so comforting, and we have found peace in that.

When Kai takes his last breath, I would like one of his mummies to be there with him. The cuddle bed – a specially adapted hospital bed with extending sides so we can share – makes that possible.

We moved down to Sussex from London in 2023. We did have experience of using a children’s hospice, but with Chestnut, it just always felt slightly different – more like a family. And we’ve been able to create memories along the way that will last forever.

We’ve built up lovely relationships with everyone from the community team to in-house and family support. Some of our most special memories of Kai as a baby were in a hydrotherapy pool, so to be able to come here and carry on those experiences – especially now, towards the end – has been so important to us.

Kai on the cuddle bed at Chestnut Tree House, with sister Aya and mums Leanne (far left) and Sara

When we got the news that Kai’s situation had changed and he would now be receiving end of life care, we were in hospital, and it was so intense. It felt like everyone was watching and we were on edge. We were scared to come here because it meant we might soon be saying goodbye, but when we walked in the door, we saw some familiar faces, had some hugs, and it felt normal again.

Kai loves the outdoors, and we can take him in the garden and even into the woodland in his day bed. Since we got here, we’ve been swimming, we’ve done so many crafts, we’ve done some handprints and most importantly, we’ve been together in our own little bubble. That’s what we wanted when we came here, because this has always been our special place. We didn’t want any friends and family visiting, we wanted this time together, just the four of us.

Our three-year-old daughter Aya is experiencing all this as well, and the staff here have been amazing with her. She’s absolutely loved it. She can get up on the bed with Kai and watch a film with him. Those little moments mean so much to us now.

Because we’ve built up relationship with the staff here over time, they know how to respond to us as individuals and as a family. They know when to check in with us, when we need a quiet moment and when we need laughter and silliness.

All these moments will become treasured memories, but that doesn’t just happen at the end of life: it happens all the way through. Chestnut has given us pockets of joy in between really difficult times.

Sadly, Kai died in December 2025. His mums are continuing to share their story in the hope that it will help other families know what to expect from end-of-life hospice care.