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.

Lucy's Story

Lucy Johnson, 11, lives with Lennox-Gastaut Syndrome, a rare and severe type of epilepsy, has global developmental delay and is registered blind.

She benefits from short breaks at our hospice in Milton, allowing her dad Andrew and mum Sharon, plus sister Katie, 13, and twin brother Liam, who she lives with in Soham, some much-needed respite.

Lucy suffered a seizure at 12 weeks old, initially thought to have been brought on by a temperature, but after another 14 in 24 hours she was diagnosed with epilepsy. The specific type was identified a year later following a series of further seizures.

Sharon explained: "At first we felt relieved that we were able to read about a condition and that we could see everything Lucy had been through was written down on paper in front of us.

"We were introduced to EACH at Milton and the hospice was nothing like we imagined. We were all made to feel very welcome in a fun and relaxed atmosphere, and when Lucy first started staying at the hospice we were allowed to stay with her as a family until we felt comfortable leaving her."

Lucy benefits from hydrotherapy at the hospice and has previously taken part in music therapy sessions.

"Hydrotherapy is really good for Lucy as it helps her muscles relax and helps her to cough up any secretions sitting on her chest, and when she stays in we can do other activities with her siblings."

We are always on hand to support its families. Last year Sharon broke her wrist, leaving her unable to give Lucy her medication, and Andrew had to work, so the care team at Milton stepped in to provide emergency care.

Sharon said the family had made many special memories during their time supported by EACH. As well as help with Lucy’s care needs, they have been fortunate enough to be given a holiday at Disneyland Paris, tickets to Disney on Ice in London and a break at Center Parcs.

  • 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
  • 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
  • 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 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
  • EACH helped us with coping mechanisms and special ways of remembering Stanley. Brad, Stanley's Dad
  • EACH has helped us keep Stanley’s memory alive. And allows us to look to the future Brad, Stanley's Dad
  • 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
  • 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
  • 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
  • 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
  • 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

The Treehouse

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

Milton

Church Lane, Milton,
Cambridge, CB24 6AB

Quidenham

Quidenham , Norwich,
Norfolk, NR16 2PH