Support Families Who Have a Terminally Ill Child

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. 

Links:

• Rainbow Trust Children's Charity home

I have been working as a Family Support Worker for Rainbow Trust Children’s Charity for over two and a half years.

The day featured below took place when lockdown restrictions were eased and I followed all protocols by wearing a face covering when doing face to face support, following social distancing when required and using hand sanitizer throughout the day.

I picked up seven-year-old Billy’s mum from Great Ormond Street Hospital. Billy is in isolation after having a bone marrow transplant at the end of October and had been staying with Mum for the past four days in isolation.

Whilst I drove Mum to the adult education centre where she is studying for a Certificate we talked about how she has been and she told me how Billy is evolving and about her worries. She thanked me for the forty-five minutes lift - this normally takes her two hours, having to take three different buses.

Then, I went to their house for a play session with her two youngest daughters; they were both home from nursery, which was closed because of COVID-19.

During the two hour session we had lots of fun playing tea parties, making towers with their Duplo bricks and I read them Peppa Pig stories, which they really enjoyed.

I then went to an after-school activity session with Jay, who is nine years old, and his older brother Matthew, 11 years old, at their home. I have been supporting them for the past eight months. Jay has chronic kidney disease so he must catheterize his bladder every two to three hours to reduce the stress on them.

Jay and I had fun painting and we chatted about how school was going. Then, Matthew and I had fun making superhero Lego figures and chatting about what we would have as a superpower if we were a superhero.

Matthew told me that he would like to have either a hammer like Thor or the claws of Wolverine. I told him that I would like to have the superpowers like the Flash or be invisible like the invisible man.

We also chatted about how school was going as he had started at a new school after moving house. He told me that he was doing okay, that he has made some new friends and is enjoying his lessons.

Before I headed back home, I had a chat with Mum and she told me that, as they can’t afford a car, when they need to do a big shop they have to go by taxi, which stretches the family’s budget. I offered help to go shopping, providing transport to both reduce any risks of getting COVID-19 and reduce the cost for her. We arranged that I would come and see her tomorrow to take her to the supermarket.

This work is only possible thanks to your support. Thank you for all you do to help us deliver it to families with a seriously ill child.

Links:

• Our impact
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