Alexandros and his sister Aliki love their visits to Acorns' Hospice in Worcester.

Alexandros quickly finds his favourite toys, while Aliki loves the multisensory room, with its bubble towers, fibreoptic lights and different textures. It's a real home from home for them; the staff don't wear uniforms, their bedrooms are filled with pictures and bedding from home and the atmosphere is relaxed and friendly.

Both Alexandros aged 5, and Aliki, aged 4, have a very rare form of an incurable, progressive disease that affects the brain, called Leigh Syndrome. Most children with Leigh Syndrome don't live beyond seven or eight.

When Acorns was first mentioned to mum Julie, she was shocked: 'My first thought was, 'isn't that where children go to die?', but by the end of our first visit to Acorns, we knew it was the place for us. It really is a very special place, and we're so thankful that we can have respite care locally, at the hospice in Worcester.'

Julie added, 'No parent wants to hear that their child will have a very short life, let alone have to cope with the shattering news that they will lose both of their children, but I know that Acorns will be there when we need them one day, when the end of our time with our two wonderful children comes.'