Hear from other families

Read below to find stories from families and their children and young people accessing our services. 
 
We are always looking for new stories to illustrate our services and the impact they have on families across East Anglia. If you'd like to share your story please get in touch with Michael Jarvis in our Marketing and Communications Team on michael.jarvis@each.org.uk.

Ben's Story

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.

  • Children like Lucy don’t get the opportunity to go to sleepovers or to their friends for tea, so the interaction she has at the hospice is priceless. Heather, Lucy’s mum
  • It’s been a great opportunity to meet other parents in a similar situation, something that doesn't really happen anywhere else. Helen, William’s mum
  • EACH supports families when they’re at their absolute lowest, helping them to come to terms with their child’s illness, losing them and beyond Brad, Stanley's Dad
  • The play specialists are excellent and I also get inspiration from the activities they organise. Heather, Lucy’s mum
  • I really love going to the hospice. I’ve made friends there and get to do loads of fun stuff. Renee
  • We arrived at the hospice feeling scared and alone. We had so many questions – they answered them all and more. Claire, Jacob’s mum
  • EACH has helped us keep Stanley’s memory alive. And allows us to look to the future Brad, Stanley's Dad
  • I can’t imagine what it would have been like. Nobody should have to, every family should be offered the support we were, and are still getting Claire, Jacob’s mum
  • I didn’t realise hope was a gift until I became a mum. My little boy taught me many things and that was one of them Claire, Jacob’s mum
  • We are also supported by the 24/7 True Colours nurses and it’s so reassuring knowing we can call on them whenever we need support or advice Helen, William’s mum
  • EACH helped us with coping mechanisms and special ways of remembering Stanley. Brad, Stanley's Dad
  • Renee loves going to The Treehouse, but it’s great that care staff are also able to visit us at home too. Stacy, Renee’s mum
  • When we first heard about the hospice we were apprehensive because we didn’t know what to expect. When we got there we realised it was a lovely place where Renee would be well looked after, and we would be able to have a much-needed break. Stacy, Renee’s mum
  • EACH helps us to create lovely memories and has played an important part in all of our lives, not just Lucy’s. Heather, Lucy’s mum

The Treehouse

St. Augustine’s Gardens,
Ipswich, IP3 8NS

Milton

Church Lane, Milton,
Cambridge, CB24 6AB

Quidenham

Quidenham , Norwich,
Norfolk, NR16 2PH