Kane’s story: mum’s perspective

“Kane was three months old when he was diagnosed, and his development just plateaued. He was having seizures so often he was having to be rescued daily, and along with the medications he was on, this impacted his brain, so he lost the ability to make eye contact, move his arms, hold his head up or even take a bottle.

“In 2025, he started to become very swollen – at just under three years old he was 25kg. The doctors did blood tests which revealed his condition was no longer compatible with life. We were told he was going to pass away, and that this would happen soon.

“We were just about to move into a new bungalow, which would have been fully set up for Kane, but our flat wasn’t suitable for Kane’s end of life care, so we had the choice to either stay at the hospital or go to a hospice. We’d been in hospital when children had passed away, and I didn’t want to experience that in that setting.

“But we were very hesitant to come to Demelza for care. The day we were due to go, we almost pulled out – we were petrified. For Kane’s whole life, Craig and I had done all his care. Kane’s condition was severe and we knew his life was limited, so we decided that we wanted to keep all the time with him for us, as exhausting as it was.

“The first couple of days at Demelza were a blur. We still didn’t want to hand over care – we just wanted to do it all ourselves. It was hard to let go of that control, to let someone else care for him. But getting to know everyone at Demelza helped so much. The nurses are so down to earth, so lovely and understanding. Sometimes when you’re in medical settings, dealing with the doctors and medical staff can feel a little robotic, like you’re just a name on a list. But at Demelza it just felt totally different. We were humans.

“After a couple of days getting to know everyone, we were reassured and we felt like we could let the care team do some of the meds at night, knowing they would wake us if they needed us.

“In a way it was a relief to hand over some of that care, because I was just at zero. We both were. But we still wanted to be hands on with Kane, because that’s all Kane knew. So we were able to manage it between us and the care team. I trusted everyone at Demelza to look after him, because they are such amazing nurses.

“During his end of life care, Kane’s medications would change constantly, and it all had to go through the palliative care team in hospital, but the team at Demelza were so supportive, and they had a GP who could visit, which took that stressful task of organising medication off my hands. Throughout the two and half years of looking after Kane and dealing with doctors, a lot of it felt like a battle, and I was so tired. But Demelza stepped in, sat in on meetings and advocated for me.

“To think of having that stress at home, on top of meals, housework, keeping everything clean – we just didn’t have to worry about that background noise, we could focus on Kane. He was asleep most of the time, but we were there with him – holding his hand, playing his music, talking to him. I think he heard all of us talking and laughing and that was really nice for him. If we had been at home, it would have been a lot more stressful, because I would have had more responsibilities, but all of that was taken off me. We could just be mum and dad.

“They also invited our music therapist to visit us, which was really special. I have a song for Kane, which is ‘You are my sunshine’ – I probably used to sing it to him 50 times a day! The music therapist had done sessions at our home before, so he’s seen Kane grow, and he knew us well – he’s so lovely. It was sunny, so we went outside and he asked if we wanted him to sing Kane’s song. He started singing, and I think everyone was crying, even the nurses. It was honestly one of the most beautiful things I’ve ever experienced.

“When Kane passed, he was taken to the bereavement suite. That first night, the nurses made sure we knew that they were going to look after him, that he wouldn’t be on his own. They played his music for him and kept taking care of him – checking his pad, changing his pyjamas. It’s not like a switch went off when he passed away – he still got a lot of care, which was really nice to know.

“When you have a child with such complex health needs, and you go from caring for them all the time to suddenly not needing to make meds or change a nappy or check their sats – it’s so different but having that time in the bereavement suite really helps with that transition. Having that change happen at Demelza, instead of at home, means you have that extra time to adjust.

“I couldn’t be more grateful for Demelza. They truly are the best team and they all hold a special place in our hearts and Kane’s journey. I wouldn’t change anything about that time. It was raw at times, there were some really awful days. I was so scared, but every time something happened the right person was there for us. The compassion and support they offer is very special. I cannot thank them enough for everything they did, not only for Kane but for our family during the worst time of our lives. It was the best place to be in the worst situation.”