When Benjamin Black was born in August 2012, his family knew immediately something wasn't right.
Seven months later they were told Ben had Bohring-Opitz syndrome, an extremely rare genetic condition. They were stunned. They thought they'd never cope.
Mum Amy explained: "It was a massive relief to have a diagnosis and know what we were dealing with, but devastating at the same time I'd looked into the syndrome and knew the expectancy was only two years - which doctors confirmed.
"We spent the first two years of Ben's life grieving the healthy child we were missing and almost waiting for the dreaded day. Once he turned two and we'd met that state our outlook changed and now we look forward to every day and take them as they come."
Dealing with their anxieties alone could well be a struggle for the Cambridge family, however, since Ben was a toddler they have been a part of our community.
We provide care for children with life-threatening conditions and support for their families across East Anglia, and have one of our three hospices in Milton.
Amy explained: "EACH gives us hope that there are other people out there you can talk to and people that want to help. having that support has made it so much more bearable and easier to deal with."
Ben, a pupil at Granta school in Linton, has to be fed via a tube through day and night. His condition affected less than 60 children in the world as of 2015. He also has global development delay and, though now four, has the development age of a six-month-old.
In addition the youngster has scoliosis, an abnormal twisting and curvature of the spine that means he has a lycra suit, high myopia, which in effect means he is severely short sighted and has to wear special glasses, sleep apnoea, which causes his throat muscles to relax during sleep and therefore means he needs oxygen and a specialist monitor for his breathing, and craniosynostosis, where bones in the skull fuse together.
Ben also has to wear splints on both his legs to help him support his weight when in a standing frame, which he needs due to an inability to bear weight. Those complications mean Ben is unable to do anything for himself and as a result he needs round-the-clock care.
As well as Amy, who is 30, Ben lives in Rialto Close with dad Danny, also 30, and brother Ollie, six, who goes to Trumpington Meadows Primary School.
Ben used the hydrotherapy pool at our Milton hospice for a period of around two years before he was able to start sessions at his school. EACH continues to be of huge benefit, though, with Amy attending carer sessions, Ollie attending a siblings group and the entire family attending memory-making days. Ben is to stay overnight at the hospice for the first time on Friday, 14 April, too, giving his parents and Ollie some much-needed respite.
Amy explained: “The family memory-making days are amazing and give us that time as a family to be us without any worries – knowing everyone around us is in the same situation. The sibling days have been amazing for Ollie as he’s started to struggle with Ben’s situation and understanding what’s going on. He gets that alone time away from the family home to talk about Ben and the situation, if he wants to. The staff are great, too, at helping us as parents deal with him and in giving us ways to talk to him.
“In addition, to be able to meet up with other parents and talk about your situation really helps. We wouldn’t have some of the amazing support and friends we have now if it wasn’t for EACH.”
Amy said the family would treasure their time together at EACH forever, with too many highlights to mention. Among them are the smile on Ben’s face when he first used the sensory room - “priceless” - how heart-warming it was to see Ollie’s excitement when he arrived back from his first sibling group and all getting covered in paint whilst making a canvas of owls sitting on a branch.