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

One evening I noticed a lump on my son Jaxson’s neck. After some blood tests in hospital I was taken to a room, away from Jaxson, to talk. The nurse was carrying a box of tissues and I knew it had to be something bad.

Completely alone, in that sterile environment, I found out the devastating news that my wonderful little boy had leukaemia at just three years old.

That first night I sat in the hospital room alone whilst Jaxson slept. I just cried and cried. I couldn’t sleep as I didn’t want to take my eyes off him.

Over the next months, Jaxson endured many treatments, in and out of hospital, in-patient appointments and monthly lumbar punctures.

Those are the times when you need somebody there but with Covid added to the mix, we felt really alone. We didn’t see friends or family as we were just exhausted and our daughter Bella, who was only 14 months at the time, had to live with my mum.

Our lives were a mess. We were just surviving. Just trying to cope.

In January 2023 Family Support Worker Wendy first visited us in our home. Both children immediately loved her. They loved they had someone else to play with, someone else to give them attention and that was wonderful.

Having Wendy around gave me time out, a chance to do the jobs I needed to do, prepare lunchboxes for next day, take the dog for a needed long walk, and just to get a bit of ‘me time’.

I had closed myself off but with Wendy I had someone to open up to. She has worked with other families in similar situations and understands how our lives are turned upside down. Talking to Wendy helps me cope better.

We are eternally grateful for having such amazing support from Family Support Worker Wendy.

We are blessed that, in February this year, Jaxson rang the bell to mark the end of his cancer treatment.

There are so many families like mine, that may be feeling so helplessly alone and desperate, who need this specialist support from Rainbow Trust Family Support Workers. It is only thanks to your donations that my family received this support that we so desperately needed. Thank you.

Links:

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