Bea's Story
Help us support more families like Bea's.
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.
Bea 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.
Situations like this are nearly impossible to manage and to cope with.
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.
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.
Monica is like an arm around us, supporting us all along. We don’t have to say anything, we don’t have to explain anything. We could be completely open with her. She doesn’t judge, she has seen our situation time and time again.
When all is overwhelming, impossible to manage, feeling that there is no light, a Family Support Worker like Monica can help.
Terry, Bea's Dad
As you know, driving to and from school and hospital to provide this support is crucial to families like Bea’s. With the cost of parking at hospitals continuing to rise, petrol costs on the increase and, like all motorists in the UK, higher insurance cost on our cars, we need your help today to bridge this gap.
This winter we are also seeing Covid cases rising and many of the families we support are making the decision to isolate as their seriously ill child may be immuno-compromised. We have the duty of care to ensure all Family Support Workers are virus-free when supporting families face to face so they take Covid tests if they feel unwell. We no longer receive free tests and with Covid infections on the rise this winter we need to buy these tests ourselves.
We need your help and generosity to cover these costs.
With your help Family Support Workers like Monica can make the challenges that families living with childhood illness face that bit more manageable.