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.

Daisy’s story

Daisy Newman is eight years old. She has cerebral palsy and various other conditions meaning her life is currently confined to her family home in Carlton Colville, near Lowestoft.

Staff from​ EACH visit Daisy, her mum Joanne, dad Wayne and sister Gracie, 11, to offer care and support for six hours twice a month. 

Wayne says they “couldn’t imagine how hard it would be” without EACH, but ​we will be able to do so much more for the Newmans upon completion of the nook – a £10 million hospice to be built in Framingham Earl, near Norwich.

Daisy cannot swallow and therefore has to be fed through a tube. Medicines and milk need to be given carefully as reflux can cause her to vomit.

She also has excessive secretions that need to be suctioned regularly by a skilled carer, which is one reason ​we is so valued by the family.

Daisy has breathing difficulties, too, and every few weeks will actually stop breathing every hour for up to 18 hours. Keeping her airways clear requires constant repositioning and when her saturations drop she needs oxygen.

In addition, Daisy has physio twice a day to help relieve discomfort in her muscles and joints, particularly her right hip, which is dislocated due to the joint not forming correctly. She has gone years without seizures but they could still return.

As Daisy has very little control over her limbs she cannot play independently, instead requiring someone to understand her noises and movements and help her make her own decisions.

Wayne explains: “If it wasn’t for EACH we wouldn’t have a break. This is the only time we leave Daisy alone. We couldn’t imagine how hard it would be without the time they offer and value it very much. EACH has also given us the chance to spend a small amount of time with Daisy's sister. Gracie has gone through a lot and never complains. It’s lovely to take her out for the day and just focus on her needs.” 

Gracie attends Carlton Colville Primary School. Daisy used to attend Warren School, but is now being home-schooled due to her health.

Wayne says: “Daisy struggles with journeys in the car and travelling to Quidenham has proven difficult – it’s just too far out. We’ve had two people care for Daisy in our home for the past six years or so.

“Daisy will be able to visit the nook, though, as it’s in a less remote area. We’re looking forward to having her explore more than her own house. The interaction she’ll have with others will help her explore her understanding of life.

“The facilities at the nook will be perfect for Daisy, too. Hydrotherapy is something that’s helped her to relax and have a moment’s respite from the tightness of her muscles. We’re currently not receiving hydro and we’d love for Daisy to have access to such a wonderful facility.”

  • I really love going to the hospice. I’ve made friends there and get to do loads of fun stuff. Renee
  • 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
  • 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 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 arrived at the hospice feeling scared and alone. We had so many questions – they answered them all and more. Claire, Jacob’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 has helped us keep Stanley’s memory alive. And allows us to look to the future Brad, Stanley's Dad
  • EACH helped us with coping mechanisms and special ways of remembering Stanley. Brad, Stanley's Dad
  • The play specialists are excellent and I also get inspiration from the activities they organise. 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
  • 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
  • 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
  • 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

The Treehouse

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

Milton

Church Lane, Milton,
Cambridge, CB24 6AB

Quidenham

Quidenham , Norwich,
Norfolk, NR16 2PH