Support Families Who Have a Terminally Ill Child

Becky is a mum supported by Nicky, a Rainbow Trust Family Support Worker who provides her with emotional support. Becky’s son Leo has extremely complex health difficulties. Due to a family breakdown, Becky doesn’t have any family and friends who can help her care for Leo, so Nicky is a vital life-line to Becky when she needs it. 

“I hadn’t slept for nearly 2 years, I would just doze in between Leo’s medical alarms. I have no one, it’s just me and Leo,” she explains. Eventually, Becky suffered a serious breakdown and was referred to Rainbow Trust Children’s Charity, which provides dedicated support to parents of seriously ill children.

When Becky was first introduced to Nicky it took her quite a while to trust her. “Basically I don’t trust anyone. I have chronic depression and severe anxiety, so letting new people in to my home is hard. It took me a year to trust Nicky, but she was lovely. She kept coming back and was so supportive. I also have dyslexia which Nicky has helped with. She’s learnt when I don’t understand things and helps explain in a way that I’ll understand.”

Nicky got to know Leo carefully so as not to disrupt the close bond Leo and Nicky had. And as Nicky’s relationship with Leo grew, it also did with Becky. “Nicky was just so patient with me. I was quite open and honest at the beginning. I told her I don’t trust anyone, I don’t socialise, I don’t want anyone. I’ll support Leo through anything and be there for him, but sometime I just have to go and have a cry. That’s when I ring Rainbow Trust’s on-call service and speak to Nicky. It takes a long time for someone like me to trust someone and I trust Nicky. I’ve never had that before in my life.”

“Without Nicky I think I just couldn’t do it. When I get really wound up and can’t cope with the stress and stuff that all the other services put on me I speak to Nicky and she just listens to me. She reassures me and puts things into perspective.

"he most important thing about Rainbow Trust is just to know there is someone there that you can trust; that are open and honest with you. They can help you and guide you.”

Your donations are making a wonderful difference to Becky by funding vital Family Support Workers to care for families struggling to cope with their child’s illness. Thank you. 

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.