Physical Health United Kingdom Project #6538

Supporting Siblings of Terminally Ill Children

by Rainbow Trust Children's Charity

Supporting Siblings of Terminally Ill Children

Project Report | Jun 8, 2018
How Rainbow Trust supported my son

By Natalie | Dominic and Zach's mum

Our happy boys

When Dominic, my youngest son, was 10 weeks old, he was diagnosed with a cancerous mass on his brain, spinal column and central nervous system. Doctors told us it was extremely rare and unlikely to be treatable.

The weeks that followed were extremely difficult. I stayed with Dominic in hospital for the next five months. With no one in the hospital I knew, I felt very alone during those first few days and weeks.

I was referred to Rainbow Trust Children’s Charity and Vicky, a Family Support Worker, visited Dominic and I in the hospital. That gave me a few hours to grab a shower, get off the ward and relish the outside air. Rainbow Trust Family Support Workers step in like an emergency parent and I knew that whatever happened, Vicky would be with Dominic and look after him as well as I would.

My husband wanted to keep things as normal as possible for his brother Zach at home. Zach struggled not having me around. I told him he could talk to me about anything that was bothering him to which he replied, “I can’t mummy, you’re never here because you live in the hospital.” To suddenly be thrown into a situation where his new brother, whom he adored, was very ill, and to have his mummy leave home for a length of time, must have seemed very daunting to a little boy.

Vicky took Zach on days out and to Rainbow Trust drop in groups where he met and talked to other children and families in similar situations. Knowing Zach was with someone I trusted, was hugely comforting. Vicky worked with many families in similar situations and I knew she’d listen to Zach and maybe be able to offer him comfort and reassurance in a different way to me. He was her number one priority. Zach being with Vicky allowed me to give 100 per cent attention to Dominic without feeling like I was depriving his brother.

Rainbow Trust Family Support Workers are like having an extra family member. They offer support in whichever way you need it. Most importantly, they carry out the work they do without any sense of judgment. Unlike friends or family members who have never experienced a similar situation, they just seem to get it and having someone there who genuinely understands and cares about you, your children and your situation, is simply amazing. Obviously, the anxiety of having a sick child is never fully removed but having a team like Rainbow Trust helps relieve some of the stress and often helps the parent of a sick child gain a fresh perspective of the situation which can make a huge difference to the emotional health of a family.

Thank you for supporting this appeal.

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Mar 12, 2018
Why Tuesdays are special for Alexander

By Jenny-Anne Dexter | Project Leader

Alexander with Brodie and big sister Abigail

Every Tuesday, three-year-old Alexander sits by the window of his home, looking out for Brodie, their Family Support Worker. Brodie supports the family because Noel, Alexander’s twin brother, developed a brain injury at birth and is on round-the-clock oxygen.

Rainbow Trust has been supporting the family for two years. Dad Darren says Rainbow Trust and Brodie has made a huge difference to their lives, supporting the whole family and providing some much needed respite for him and Isobel, his wife.

“The first thing Alexander asks on a Tuesday morning is whether Brodie is coming. It gives the kids a break and some attention because a lot of the time is spent around Noel because of his disabilities. Even on fun days out, life revolves around Noel.”

During Brodie’s visits, she spends time with Alexander and Noel and takes Alexander to collect big sister Abigail from school to give Darren some respite. She plays games, crafts with them and uses sensory toys to stimulate them. This frees up time for Darren to, either spend with Noel, or to catch up on some household chores.

“We would really struggle without Brodie. Collecting Abigail from school should be a five-minute job but getting Noel ready and in his wheelchair is an hour’s operation. I do that at least three times a week so to have the extra time when Brodie is here is great. It sounds a small thing but in my world and the children’s world, that makes a great difference.

“There have been times outside Brodie’s regular Tuesday appointments where she has helped me out by picking up Abigail from school and brought her to the hospital. If Noel’s in hospital, we have to be with him 24-7. She’s gone out of her way to help us with what is a very stressful time. We love Rainbow Trust in general and Brodie. It has changed our lives.”

Rainbow Trust enables families who have a child with a life threatening illness to make the most of their time together by pairing them with an expert Family Support Worker who helps them at home, in hospital and in the community, for as long as is needed. Your donations are making it possible for Darren and his wife to cope with everyday life, despite Noel’s illness.

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Dec 13, 2017
How Eleanor helps Tyler and Hope

By Leanne | Hope's mum

Hope today

When Dean and I went for my 20 week scan, we were told that our baby girl had a heart defect. Doctors said it was so severe that she may not survive the pregnancy and if she did survive, she probably wouldn’t live for very long.

Against the odds, she survived and that’s why we called her Hope. Hope has Ebstein Anomaly. The right side of her heart is severely deformed so the left side of her heart has to work twice as hard to keep pumping oxygenated blood around her body.

When she was born, she was whisked away for heart surgery to try and repair her damaged heart. Hope was in hospital for five weeks during which time, Tyler, our then two year old son, had to stay with Dean’s mum and dad.

When we got home from the hospital we had to watch Hope constantly. We still do.

I felt we needed some support so I looked around and found Rainbow Trust Children's Charity. They came to assess us and Eleanor, our Family Support Worker, started supporting us when Hope was three months old. She’s been just brilliant. I don’t drive so Dean had had to take time off work to take Hope and I to the hospital. Eleanor was able to take us to Hope’s hospital appointments and played with Tyler in the playroom while I was in with the doctors. This meant that Dean could stay at work and Tyler still had some fun, even at the hospital.

When we were home, Eleanor helped me with Hope, feeding her when Tyler needed me or playing with Tyler when Hope had appointments. It made life so much easier for us and it relieved so much of the guilt I had felt. Tyler was still getting to have fun and Eleanor’s support meant I could spend time with him on his own knowing Hope was in very safe hands.

It’s such a relief knowing there is someone there to turn to who really does understand. People who don’t have a poorly child don’t always understand what it is like for us on a daily basis.

Having to watch Hope constantly is exhausting but with Eleanor’s help, I honestly feel like all the stress falls away and I breathe a sigh of relief. Knowing that Hope’s health is so precarious, we live in the moment and we don’t take anything for granted.

Eleanor helps us do this too – she gives me time to spend with Hope on her own and I get to spend time with Tyler on his own. This is so precious to both Dean and I, and the children. Tyler still needs that one to one attention from an adult and Eleanor allows us to give him that time.

I don’t know what we’d do without Eleanor, she has become a very special part of our lives and I know I can call on her to help whenever she can. We couldn’t do this without Eleanor or Rainbow Trust.

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