| Jul 27, 2021
Providing a trusted constant throughout long illness
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 with grandad Phil
Mum Helen, Erin and Family Support Worker Sarah