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.