Support Families Who Have a Terminally Ill Child

by Rainbow Trust Children's Charity
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Support Families Who Have a Terminally Ill Child
Support Families Who Have a Terminally Ill Child
Support Families Who Have a Terminally Ill Child

Project Report | Oct 26, 2020
Pandemic Pressures - The Struggles and Resilience of Families Caring for a Seriously Ill Child

By Hanne Widmer | Project Leader

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.

Family Support Worker, Charlotte
Family Support Worker, Charlotte
Frank, who is supported by Rainbow Trust
Frank, who is supported by Rainbow Trust


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Organization Information

Rainbow Trust Children's Charity

Location: Leatherhead, Surrey - United Kingdom
Facebook: Facebook Page
Twitter: @RainbowTrustCC
Project Leader:
Hanne Widmer
Leatherhead , Surrey United Kingdom
$31,073 raised of $40,000 goal
646 donations
$8,927 to go
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