Support Families Who Have a Terminally Ill Child

by Rainbow Trust Children's Charity
Play Video
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 | Jul 27, 2021
Providing a trusted constant throughout long illness

By Hanne Widmer | Project Leader

Family Support Worker Sarah with Erin
Family Support Worker Sarah with Erin

The nature of life-threatening and terminal conditions in children is such that many families find themselves living under intense uncertainty for long periods of time. Their lives can change dramatically over that time, and so having a trusted constant throughout to help navigate the changes can make a positive difference in their lives.

Erin is seven years old and has multiple long term and life-threatening conditions, including heart, kidney and liver disease, vasculitis and severe hypertension. Erin has had sepsis many times and has an autoimmune disease that causes the body’s immune system to attack and kill blood cells. Erin has to date received 112 blood transfusions.

Family Support Worker Sarah started supporting the family in 2015 when Erin was a baby after a referral by a Community Nurse. Initially, Sarah helped out with hospital appointments, driving mum Helen and Erin to London, so she didn’t have to worry about parking or traffic, which Helen says was an enormous relief. Sarah would care for Erin so that Helen could have a break.

Erin was very fragile, needing constant care, which made it very difficult for Helen to live a normal life. Helen was unable to work and they were forced to move in with her father, Erin’s grandad Phil, due to the pressure of finances. Sarah also supported Phil when he began to struggle with the pressure of caring for Erin, and the regular stays in hospital.

Five years on, Sarah continues to support Erin and her family. Erin is now seven years old and she suffers with loneliness due to her inability to play with others, because she is so seriously ill. She does not have many people in her life, but Family Support Worker Sarah is a trusted constant, reducing the family’s isolation and giving them opportunities to have fun together.

Erin has multiple appointments with specialists, she takes 17 types of medication and has frequent blood tests. Sarah has helped to join up the services supporting Erin, liaising with professionals to ensure consistency in Erin’s care.

“When others could not be there with us, when we were in very vulnerable situations, Sarah’s been there. She has given us both support and friendship. She has been present and by my side in awful and traumatic medical consultations where we have received terrible news. She listened and was there for us. You do not want to have to repeat or recount that to anyone, and with Sarah you do not have to as she was there by our side. Even if Sarah cannot be there in person, like during lockdown, just a phone call makes all the difference as she knows what to say to me. Sarah understands and is there for us both.”

Rainbow Trust Family Support Workers provide bespoke continued support to families like Erin's, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

It is only thanks to your donations that families like Erin's have the help they need. Thank you for your support. 

Erin makes a rainbow in lockdown
Erin makes a rainbow in lockdown
Erin with grandad Phil
Erin with grandad Phil
Mum Helen, Erin and Family Support Worker Sarah
Mum Helen, Erin and Family Support Worker Sarah


Share on Twitter Share on Facebook

Apr 8, 2021
A day in the life of Family Support Worker Ema

By Ema | Rainbow Trust Family Support Worker

Dec 10, 2020
Christmas is the perfect time to give hope

By Aimee | Mum to Phoebe, Ollie and Myles

About Project Reports

Project reports on GlobalGiving are posted directly to by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.

If you donate to this project or have donated to this project, you can recieve an email when this project posts a report. You can also subscribe for reports without donating.

Sign up for updates

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
Donate Now
Donating through GlobalGiving is safe, secure, and easy with many payment options to choose from. View other ways to donate

Rainbow Trust Children's Charity has earned this recognition on GlobalGiving:

Help raise money!

Support this important cause by creating a personalized fundraising page.

Start a Fundraiser

Learn more about GlobalGiving

Teenage Science Students
Vetting +
Due Diligence


Woman Holding a Gift Card
Gift Cards

Young Girl with a Bicycle

Get incredible stories, promotions, and matching offers in your inbox

WARNING: Javascript is currently disabled or is not available in your browser. GlobalGiving makes extensive use of Javascript and will not function properly with Javascript disabled. Please enable Javascript and refresh this page.