Support Families Who Have a Terminally Ill Child

Our latest report, #PandemicPressures, outlines the change in the role of our Family Support Workers throughout the COVID-19 pandemic to ensure families caring for a life-threatened or seriously ill child still get the support they need.

Family Support Worker, Charlotte, was using child-led play but when the lockdown began, it was suddenly necessary to switch these sessions to video calls. Charlotte provided 13 families with this support, virtually playing each week with children between the ages of three and 14.

She said: "Whilst enjoying playing together with a sibling of a little girl who is recovering from cancer, she unexpectedly said to me, 'Charlotte, I would really like to talk to you about my feelings'. Each child is different but most of them jump straight into the world of play, and I will end up going wherever that takes us.

"I've been on a virtual pony trek (fashioning a pony from a stool), pretended to be a Teenage Mutant Ninja Turtle, had a teddy bear's picnic and even hosted a birthday party for the Gruffalo."

Charlotte is continuing to provide a mix of face-to-face support and virtual play depending on the family's circumstances.

Rachel's son, Frank, 12, has Batten Disease and is completely reliant on others for his care as he cannot move himself or communicate. He is especially vulnerable to chest infections which means COVID-19 is a grave threat to his health.

In case Rachel or her husband became ill, she ran through Frank's medication with her older children who were 16 and 19 at the time.

She said: "They were prepared to do everything they could, and they had to have a crash course in how to do things... I'm sure that was quite daunting for them."

Looking ahead, Rachel continues to feel anxious and will remain vigilant. "The virus has not gone away. Frank is still very vulnerable."

Rainbow Trust Children’s Charity has quickly innovated and adapted its service, in line with local guidance, to make sure that as many families as possible receive the tailored support that they need, whether virtually or face to face.

Your donations make this work possible for families with a seriously ill child so we are very grateful for each and every donation we receive.

Thank you for your support. We can't do this work without you.

Links:

• Pandemic Pressures, living with childhood illness in Covid times

I hope you are safe and well.

During the Covid-19 pandemic some of the families we support have needed our Family Support Workers to source medical and food supplies and drop them to their doors. Our Family Support Workers have also been providing transport to dialysis sessions, taking breast milk from new mothers unable to see their premature babies in the neonatal units because they had coronavirus symptoms, helping arrange children’s funerals and providing bereavement support to the devastated parents and siblings. Your support has enabled us to be on the frontline of the coronavirus pandemic.

Tara is mum to two-year-old Asher, who has life limiting conditions, and to two daughters, aged three and seven.

The pandemic has been especially tough for them. Not only because of lockdown and self-isolation but they also had to re-schedule vital hospital appointments and Asher hasn’t had necessary tests because they are shielding as a family to protect him. 

Our Family Support Worker, Carly, has been a lifeline providing practical and emotional support to the family with video calls, playing games with the children online and also giving emotional support. This support has helped them feel less scared and less anxious. Carly's support has helped them face the fear of the unknown, the anguish of the new normal, the isolation and despair that this crisis has exacerbated.

Tara tells us that it has been very challenging: all the lifelines they had before the pandemic were taken away so to have Carly supporting them and giving their family that continuity has been crucial during this incredibly difficult time.

Since the coronavirus crisis started our Family Support Workers have been working on the front line, supporting vulnerable families, like Tara’s.

We would like to thank you for your wonderful support. We can't do this wonderful work without you.

Thank you.