Support Families Who Have a Terminally Ill Child

My little girl Emily was diagnosed with leukaemia when she was eight years old. I was referred to Rainbow Trust, because I was alone, with little support. I was struggling to carry on with everyday things while worrying about Emily’s treatment. A Family Support Worker called Sarah came round to give us practical support, and Emily adored her straight away.

When Emily’s with Sarah, I don’t have to worry about her, all I hear is laughter. She’s so easy to talk to. I can ask her if Emily’s alright, as she opens up to Sarah and she can tell me if there is anything I need to know. I can also tell her if I am having a bad day. The hours she gives us means we have some normality again and Emily needs that. With Sarah, I feel like a load of bricks has been lifted off of my shoulders.

I remember that first day, I didn’t know what to do with myself. She told me to go shopping for two hours – I was standing in the middle of the supermarket with my trolley feeling guilty for leaving Emily at home.

But Sarah’s help gave me that breathing space that I hadn’t had since Emily was diagnosed. I didn’t think this kind of practical help would make a difference but it really does. She’s made life more bearable which I didn’t think was possible.

Sarah deals with children like Emily every day. She can help with advice and knows what to do in a crisis. I trust her with Emily, my precious child. Everyone in that situation should have a Family Support Worker. I can’t thank Rainbow Trust enough.

Sophie and Matthew were devastated when they were told that their baby boy had two holes in his heart. Alfie underwent open heart surgery at just seven months old to repair the holes in his heart.  

A few months later, Sophie fell pregnant with their second child, Frankie, but when Frankie was just six months old, Alfie was diagnosed with leukaemia. “Frankie practically lived with Matthew’s mum,” remembers Sophie. Trying to juggle a new baby and hospital appointments was close to impossible but the family did their best to take care of both boys.

Matthew was going backwards and forwards to the hospital trying to work and see Alfie and Sophie. We only ever saw each other as we were passing, either coming or going. It’s very lonely,” remembers Sophie.

Alfie responded well to the treatment and, once again, life settled down for the family. A few years later, Sophie gave birth to another baby boy but when Dennie was just one, Alfie relapsed.

Dennie was looked after by various family members while Sophie was in the hospital with Alfie and Frankie was at school. Matthew had to go back to work, Sophie would come home at weekends and Matthew would spend the weekend at the hospital.

“The first time around, I didn’t ask for help as I felt I was failing as a parent but this time, knowing what to expect, I knew I wouldn’t be able to be the parent I wanted to be without help.

“I heard about Rainbow Trust from a social worker. I asked her if there was any help I could have at home. I knew having Alfie at home in a wheelchair and the two boys would be very difficult.”

Jessica, a West London based Rainbow Trust Family Support Worker started visiting and supporting the family.

“I haven’t felt so alone this time. I feel I can pick up the phone to Jessica and say, ‘I really need you today, is there any way you can come?’ She always makes a plan to come and help.

“We feel like a family unit again, because I can spend time with my other children while she spends time with Alfie. Alfie and I have made a really good friendship with Jessica that will last a lifetime.”

Every donation you make to Rainbow Trust Children’s Charity will support families like Sophie and Matthew’s, for whom the simple things make a huge difference for the whole family. Thank you.