Supporting Terminally Ill Children

Tiny Teddy was born at just 23 weeks, in April last year. As he was born so prematurely, he spent five months in hospital and the family was referred to Rainbow Trust for support.

Family Support Workers Fiona and Lucky spent time with Bella, Teddy’s older sister, at the family home so that Obobo, his mum, could give Teddy the one-to-one attention he needed. “I just couldn’t give either of my children the support and attention I wanted for them so, having Fiona and Lucky was a huge help.” Fiona and Lucky were able to make sure Bella was given time to play like any other little girl as well as talk to someone who knew how she might be feeling, in case she wanted to ask questions about what was happening.

By September, Teddy was well enough to go home. He was doing well but, having been so premature, was prone to infection. He developed pneumonia and sadly passed away the next month. Obobo has set up a Forever Fund in Teddy’s memory, which will provide care for other families who need a Family Support Worker.

“I wanted to honour Teddy’s life and the best way to do that was through a Forever Fund for Rainbow Trust. This way he will always be remembered and, if it helps even one family, it will make a difference. Rainbow Trust supported my family and me and gave me time with each of my children when they needed it most. With this fund, more families will have the support too.”

We’re incredibly grateful for every donation we receive, which can help parents of seriously ill children from the point of diagnosis, through bereavement and for as long as they need us. Many families receive help from a Family Support Worker for a number of years and this is only possible through the wonderful support we receive.

Poppy was two when she was diagnosed with leukaemia in February last year. Treatment started immediately and Poppy was in hospital for seven weeks. She barely moved and when she was finally discharged, she couldn’t walk.

She’d spent so long in bed not using her muscles that they’d wasted away and she’d forgotten how to walk. We did physio with her in hospital and at home. We saw her determination that day and knew she was going to fight this every step of the way.

I started looking around to see if I could access any emotional support for our family. I’d been away from my husband and my other daughter Mia for seven weeks. Our social worker put us in touch with Rainbow Trust Children's Charity and a Family Support Worker called Nicki started visiting soon after.

Having Nicki to help made life so much easier – it didn’t take long to feel comfortable with her – we all love having her here. The days that Nicki takes us to the hospital, Poppy feels less stressed and I am calmer. I know I can leave her with Nicki and I’m not just leaving her alone in her bed.

Poppy’s hospital appointments often start at 8am and she and I can be there till six in the evening. Nicki takes us up to the hospital and spends the whole day with us.

I can’t even let myself think about what it’d be like without Nicki’s support. She’s made our lives so much easier, the girls adore her and I feel so much calmer knowing she is there to help us. She has helped all of us and I’d recommend Rainbow Trust to anyone who needed them.