Date published: 10 April 2024 by Katie Inglis

National Siblings Day aims to raise awareness of the valuable role brothers and sisters play in each other’s lives. Every year on National Siblings Day, Rainbow Trust celebrates the incredible strength of siblings with a seriously ill brother or sister, who often face a range of their own unique challenges.

Having a child with a life-threatening illness can affect the entire family. Rainbow Trust Family Support Workers help siblings cope through one-to-one support, and sibling groups and events. This can be a chance for siblings to share their worries and anxieties, or just simply a chance to have fun away from the family home. Rainbow Trust’s support is tailored to each family’s individual needs.

This year, we’d like to share Esme’s story to illustrate the importance of sibling support for a family with a seriously ill child.

Rainbow Trust Children’s Charity provides support to Christchurch based family, Esme aged three and her mum Carly and older brother Arthur. Esme was diagnosed with a complex epileptic condition called SCN8A when she was less than a year old and her condition means she has lost the ability to sit up, the use of her hands, and she struggles to hold her head up.

Due to her complex medical needs and the frequent hospital trips, everyday life completely changed for Carly, Esme and brother Arthur, and the family first began receiving support from Family Support Worker Georgia in January 2022.

Carly describes the relief of having Georgia’s support;

“I was borderline suicidal at one point. I was at my complete lowest. But Georgia is someone that I can just offload to. I can be at home on my own a lot without seeing another adult, so it’s just great to have her. Life without her would be really difficult; Arthur in particular would also really miss her – she takes him on days out and plans fun activities for him outside of the home. Time with Georgia is invaluable for Arthur, as he gets one to one time with her to do fun things that I don’t have time for due to Esme’s needs.”

The family has also benefitted from donated tickets to Paulton’s Park where they have attended Rainbow Trust family days out with their Family Support Worker’s support, giving them a chance to make memories together as a family, and helping big brother Arthur feel special.

Since March 2023, Carly and her family have been supported by Family Support Worker Michelle who continues to provide sibling support for Arthur.

Mum Carly says;

“Rainbow Trust has been there since just after Esme’s diagnosis – they’ve been on the journey with all of us and knows us really well. I know if I had a crisis, even if our Family Support Worker physically couldn’t come and help, they would find someone who could, and they would listen. Their care for and help with Arthur has been invaluable”.

Rainbow Trust supports families who have a child with a life-threatening or terminal illness. When a child has a serious illness, family life is turned upside down and time becomes more precious than ever. Rainbow Trust pairs each family with an expert Family Support Worker who enables them to make the most of time together, giving them practical and emotional support, whenever they need it, for as long as is needed.

A donation of £15 to Rainbow Trust could cover the cost of a day out, to a cinema or bowling, for a sibling of a seriously ill child, which can make a real difference to families like Carly’s. If you are able to please donate today to help more families like Arthur’s.