Rainbow Trust Children’s Charity supports families who have a child with a life-threatening or terminal illness. Family Support Worker Monica has been supporting two-year-old Bea and her family since July 2022 with both practical and emotional support.
Bea suffered heart failure and cardiac arrest at 15 months old. She needed a heart transplant and stayed in hospital for 14 months, 13 of which were waiting for the heart transplant. During all that time Cheryl and Terry, Bea’s mum and dad, took it in turns to be with her. Cheryl had to go on sick leave and eventually her income completely stopped.
On top of the immense worries the family had, fearing the worst every day as Bea’s life depended on a mechanical heart, they also had to live with the stress and concern about their crippling financial situation. Bills don’t go away, and with the ongoing cost-of-living crisis, Cheryl and Terry worried if they would have a home to bring Bea back to. Alongside this, Cheryl and Terry were in hospital every day. A lonely, clinical and sterile place. Parents can’t stay the night so every evening Cheryl and Terry said goodnight to their baby, not knowing if it would be the last time.
Situations like this are nearly impossible to manage and to cope with.
As the family was split, Monica helped them by taking Eliza, Bea’s sister who is now 13, to and from school and driving with Eliza to the hospital. Monica would then stay in hospital with Bea. By staying with Bea in hospital Monica provided respite to Cheryl and Terry, she gave them time with Eliza, who also needs them. Monica supported the whole family emotionally as well. She gave Cheryl and Terry space and time to talk, actively listening, without judging, to help them see things more clearly.
Bea's Story was used for our No Family Alone Appeal which aimed to raise enough funds in 72 hours to support 100 new children and families. The funds raised during the Appeal will allow Rainbow Trust Family Support Workers to provide essential support to around 400 family members, such as parents, seriously ill children, siblings and grandparents, helping to make their lives a little easier.
Rainbow Trust is the leading organisation providing emotional and practical support to families who have a child with a life threatening or terminal illness.
There are over 86,000* children in England with life-limiting or life-threatening conditions. This number has trebled over the last 17 years and is rising. Thousands of families have to face the very real possibility that their child may die and struggle to cope on a day to day basis. Rainbow Trust pairs each family with an expert Family Support Worker who provide a lifeline to these families and children, enabling them to make the most of their time together, giving them practical and emotional support, whenever they need it, for as long as is needed.
We support the whole family including parents, carers, the unwell child, brothers, sisters and grandparents. Support is hugely varied and depends on the needs of the family. It can include:
*Make Every Child Count study, University of York, 2020
We align with the following UN Sustainable Development Goals: