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.

Jessica's story

Jessica is three years-old and lives in Cambridge with her mum Karen and dad David.

Jessie, as she’s known by her family, was born with only a left lung and a condition called Dextrocardia meaning her heart is positioned on the right side of her body – both of which were diagnosed during Karen’s pregnancy at her 20 week scan.  It was expected that Jessie would be vulnerable to colds, however at just four months old she began to suffer from viral chest infections so severe she was admitted to hospital as an emergency on several occasions. As a result, at six months old she spent two months in Addenbrooke’s hospital. Jessie struggled to gain weight during her early life and was fully tube fed during her time in hospital. It was during this stay they discovered she also had a narrowing of the trachea known as Tracheal Stenosis.

Jessie was referred to Great Ormond Street Hospital and it was hoped her trachea would correct itself as she grew. Unfortunately Jessie continued to struggle when she had minor colds, and didn’t have the strength to walk until she was more than two and a half years-old. After further tests Jessie underwent a slide tracheoplasty to widen her airway in March 2015.

Karen and David were made aware of ​EACH and have been receiving care and support at our Milton hospice since September 2015. Jessie attends the hospice for short-break care meaning her parents can have a proper rest knowing that she is being well cared for.

Karen, Jessie’s mum, explained: “When we heard about EACH we were hesitant to be referred at first as we always thought of the charity as being focused on end of life care. We soon realised they also support lots of children with long-term illnesses too. When Jessie stays at Milton it’s for one or two nights at a time, often her Grandma will stay there with her so she sees a familiar face in the morning and evening. She absolutely loves it.

“Jessie requires 24 hour care, as her tube feeds need monitoring throughout the night. The short-break care gives us a break from the interrupted nights, meaning we can get a proper rest without worrying about Jessie as we know she’s in safe hands.”
2016 MH 2

Milton hospice has a variety of specialist play equipment designed for children and young people of all ages and can be adapted to suit the individual needs of each child. This includes the Omnivista which is Jessie’s favourite play activity when she’s at the hospice. The Omnivista projects a variety of bright playscapes onto the floor which are movement sensitive – allowing Jessie to interact with the images.

“Jessie loves “splatting” as she calls it, when she goes to the hospice – which is where she jumps on the fish that are projected on the floor.  Every time we tell her she’s going to EACH she says she’s going to do some splatting! It’s a joy to watch her having fun when she’s there.

“Going to Milton allows children like Jessie to play with other children in a safe environment and gives parents a much needed breather from what are often complex care routines. The support we receive from them is just fantastic!”

  • EACH helped us with coping mechanisms and special ways of remembering Stanley. 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
  • 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
  • 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
  • We arrived at the hospice feeling scared and alone. We had so many questions – they answered them all and more. 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
  • 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
  • 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
  • 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
  • EACH has helped us keep Stanley’s memory alive. And allows us to look to the future Brad, Stanley's Dad
  • 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
  • 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
  • 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

The Treehouse

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

Milton

Church Lane, Milton,
Cambridge, CB24 6AB

Quidenham

Quidenham , Norwich,
Norfolk, NR16 2PH