Supporting Siblings of Terminally Ill Children

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.

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.