Tom’s mum, Gillian, says she lived and breathed Bluebell Wood. Tom was one of the first children to come to the hospice, and when he was 21 years old he passed away at the hospice in his mum’s arms. Gillian shares his story:

“When we had Tom, we didn’t expect to have any problems. But after he was born, we discovered he had a heart defect and was severely brain damaged. Suddenly our lives were thrown into a world of disability.

“A friend of mine told me about another children’s hospice, so I got involved in raising money to build Bluebell Wood. When it finally opened in 2008, it felt like we were being saved. Tom needed watching 24/7 and we knew any moment he could die – he stopped breathing five times during his life – so being able to come here and have someone say ‘you do nothing – we’ll take over’ was amazing.

“The hospice felt purpose built for Tom – he just loved it! I remember when Tom was in the music room and the staff took his hands, which he would flap in an uncoordinated way, and put a piano in front of him and help him hit those notes. He was really laughing. That’s the kind of fun place it is.

“As a parent I could do exactly what I wanted to – I could sleep in Tom’s room at night, or just nip out to the cinema. I had that freedom, but I knew I was only at the opposite end of the building if the care team needed me.”

Soon after Tom turned 21, he had a serious fit and stopped breathing. He was rushed to intensive care, where the doctors told Gillian that he might not make it. She said: “It was the day we’d been dreading. We’d been in these situations before, but this time it felt different. I knew he’d had a major bleed on his brain and probably wouldn’t recover. He’d always had this beautiful smile, and I thought, if he couldn’t smile, it would be kinder to let him go.

“That Sunday, I headed to the hospital knowing I was turning off Tom’s life-support, something no mum should ever have to do. I wrapped him in his blanket and tucked his favourite toy, Barney, under his arm and then they took his life-support off, but he didn’t die. That’s when we asked to go to Bluebell Wood.

“After we arrived at Bluebell Wood I got in bed beside Tom, and his chest was going up and down. My sister put on the song ‘Fields of Gold’ and just before the end of the song his chest went up and down, and never went up again. He’d just slipped away so peacefully. I always worried I’d never be with him when he passed away, but in the end everything turned out perfectly.

After Tom died, Gillian and her family stayed in our Forget-me-not suite, where they could visit Tom whenever they wanted. She said: “Having the hospice was perfect for us, they looked after us so well and surrounded our whole family with love. Tom wouldn’t have been able to live with all the difficulties he had for 21 years without their incredible support.”