Support Families Who Have a Terminally Ill Child

Erhun had a complex condition which meant he needed 24/7 oxygen therapy and constant care. 

Family Support Worker Shelly regularly provided transport, driving Erhun, Rosemary, his mum, and Owen, his now five-year-old sister, to hospital appointments and for overnight stays at a hospice. 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. 

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. 

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. 

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 andcan 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. 

Rainbow Trust’s bereavement support is an essential aspect of support for the whole family. Family Support Workers are a constant presence for as long as it is needed.  

Your donation makes this crucial support possible. Thank you. 

Links:

• Find out more about Rainbow Trust
• Sponsor a Family Support Worker like Shelly