Erin’s story

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Est. read time: 3-4 minutes.

Very sadly, Erin died in December 2022. We continue to support Helen and her family.

*Erin and Helen win a competition to name a brand new East of England Children’s Palliative Care Service – watch and read their story below! *

An inspirational eight-year-old with life-threatening health conditions has shown her creativity by naming and helping design the logo for a new palliative care service. Erin Sadler and mum Helen won a competition after coming up with the acronym RAaFT.

The Regional Advice and Facilitation Team is a new service for babies, children, young people and families being launched at Cambridge University Hospitals NHS Foundation Trust (CUH). RAaFT is spearheaded by CUH in partnership with East Anglia’s Children’s Hospices (EACH), Keech Hospice Care and Little Havens Hospice.

Erin has a number of complex issues, including some that affect her heart, kidneys and liver, and is a regular visitor to the EACH hospice in Ipswich, The Treehouse. Together with Helen, the pair came up with the acronym and produced a logo depicting a log raft carrying three people, including a young person in a wheelchair and a parent cradling a baby.

“It’s very exciting and I’m thrilled for Erin,” said Helen, who lives in Colchester and spotted the competition on Facebook. It came at a very difficult time after we’d been told that, potentially, she only had a few weeks left because of the deterioration of her kidneys.

“We sat down together, batting ideas around, and I said to her ‘what would we need if we were lost at sea? Erin said ‘raft’ and I then made the acronym fit. I don’t think I could have done the same if she’d said dinghy!

“We started drawing little sketches and spoke about how many logs we’d need and who would be on it. We were thinking about what we’d need throughout the whole experience and time under hospice, palliative care services.

“The logs lining up represent the elements of services coming together to support you when you feel so, so lost. It’s such an overwhelming time and not just at the beginning. It’s an ongoing process.”

RAaFT has been set up in response to the growing number of babies, children and young people in the East of England with life-limiting and life-threatening conditions and made possible thanks to funding by NHS England.

“The competition was a game for Erin but quite poignant for me, because I felt lost at that time,” added Helen. “I feel this is part of her legacy and I’m so proud and thrilled because, although I built on the concept, it was very much her idea. When I was drawing the person in a wheelchair, I was sketching her.”

Erin was presented with a framed image of the logo during a recent visit to The Treehouse. She requires care 24 hours a day, seven days a week and Helen is a long-standing champion of EACH.

“Erin’s a very brave, inspirational little girl and I’m so proud of her,” she said. “We’re very much living in the moment and the care and support we receive makes such a difference to us both, just as it does many other families across East Anglia.

“The Treehouse has become such an important place to us and I love it when people take an interest in Erin’s story. I want as many people as possible to see her beautiful, smiling face.

“Erin’s been through so much but still has a real zest for life. She’s a force of nature and shines so bright. The Treehouse is a place where she has moments of real joy and feels happy, safe and secure. From my point of view, as a parent, that means so much.”

Published in September 2022

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100). 

 

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

Erin’s a very brave, inspirational little girl and I’m so proud of her

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