Erhun's Story

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When the unthinkable happens Rainbow Trust’s support is unwavering.

From practical and emotional to bereavement support: how Family Support Worker Shelly continues to support a family in crisis.

At Christmas in 2022 we shared two-year-old Erhun’s story and his family’s struggle with the rising cost of living. Erhun had a complex condition which meant he needed 24/7 oxygen therapy and constant care.

Family Support Worker Shelly began giving practical and emotional support to the family in January 2021. She regularly provided transport, driving Erhun, Rosemary, his mum, and Owen, his now five-year-old sister, from Middlesborough to Newcastle for hospital appointments and for
overnight stays at a hospice.

Travel was an impossible expense for Rosemary, a single parent who was unable to work due to Erhun’s condition, his needs and his young age. Shelly’s support eased costs and stress, ensuring Erhun did not miss essential treatments. Shelly further alleviated this stress by dropping off and picking up Owen from school. Often Shelly and Owen would stop off at the park, giving Owen time to play and have one-to-one support.

Shelly also sat with the family in hospital to help look after Erhun and attended all the appointments to ensure Rosemary did not miss any important information, supporting when there may be bad news.

This emotional and practical support was critical for Rosemary’s family until January 2024, when the nature of support the family needed changed.

Sadly, Erhun died at just three-years-old of a cancerous tumour.

Erhun had been getting better, he was able to go to school and come off his oxygen therapy for a couple of hours a day. He loved this freedom, it made him smile and run around laughing.

However, at the end of last year Erhun was diagnosed with cancer. When it was discovered, the cancer was too advanced and far along that chemotherapy did not help. Rosemary had little time to prepare before Erhun died.

When a child dies all medical care and support stops and families are left completely alone. As there is no medical need any longer, the ‘normal’ for a family changes.

Family Support Workers like Shelly continue their support through bereavement, for as long as the family needs it. They are well placed to do this as they have supported the family through diagnosis, illness and death. Shelly has continued to provide weekly support for Rosemary and Owen as they grieve Erhun.

Shelly’s support for Rosemary is tailored to her needs; whether it be getting Rosemary out of the house and into a different environment, or accompanying Rosemary when she visited Erhun’s grave for the first time.

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Today I supported Rosemary and Owen at the cemetery, to celebrate what would have been Erhun's fourth birthday. It was the first birthday since he died.


We decorated his grave with glow sticks, windmills and birthday balloons, and Owen made a very special unicorn garden. We celebrated by eating cake, singing songs, dancing and blowing bubbles. I felt very honoured to be asked to be a part of it.


Happy birthday Erhun.

Shelly, Family Support Worker

The death of a child is one of the hardest things a parent can experience.

Shelly’s support gives Rosemary the chance to cry, share memories of Erhun, plan for the future and explore her grief with someone who understands and knows her situation.

For young children who have no experience of death, it can be very hard to process and understand the death of a brother or sister. Parents may struggle with helping their children to express their emotions when they are already feeling so much pain themselves.

Shelly helps Owen to learn coping mechanisms for her grief through play and by reading children’s bereavement books. She gives Owen a space where she can talk about Erhun as much as she wants, allowing Rosemary a chance to focus on her own emotions. Owen can ask any difficult questions she has about his death that Rosemary may struggle to answer.

Shelly’s practical support has also been vital for Rosemary and Owen, especially around the time of Erhun’s funeral. Shelly helped with funeral planning and arrangements and drove Rosemary and other family members to and from the funeral parlour to see Erhun, giving them the chance to focus on spending valuable time together and on their grief instead of worrying about practicalities.

During this incredibly hard time, Shelly’s support has allowed Rosemary to focus on her bereavement while knowing that she is not alone. She has helped, and continues to help, Rosemary and Owen to adapt to their new circumstances as they learn how to build a life around their grief.

Rosemary now has a new job as a carer and has started a college course. Recently, Shelly drove her to and from the college to enrol in children’s nursing and midwifery. During the journey, Shelly provided much-needed emotional and bereavement support. They spoke about Rosemary’s plans for work and education, and her hopes for the future.

Shelly has also been providing more sibling support for Owen, taking her out, giving her the chance to play and discuss how she is feeling. These opportunities to chat about her feelings are crucial to ensuring that Owen’s development does not fall behind.

Rainbow Trust’s bereavement support is an essential aspect of support for the whole family. Family Support Workers are a stable presence, giving support for as long as it is needed. Please donate today to help us support more families like Erhun's.

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£5 could provide bereavement support to help a family cope with the death of a child.

Continued support for a family for as long as they need us

Continued support for a family for as long as they need us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone. We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

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