Physical Health United Kingdom Project #9284

Supporting Terminally Ill Children

by Rainbow Trust Children's Charity

Project Report | Feb 11, 2019
The Story of Hope

By Angela Francis | Project Leader

Hope receiving treatment

When Hope was a year old she was diagnosed with severe asthma, severe angioedema, inflammatory bowel disease, seizures and coeliac disease, all conditions with the most unpleasant symptoms and which have resulted in over 200 hospital admissions, physiotherapy four times a day and 22 daily medications.

As Hope admits, life has been a struggle, restricted as she has been by her condition. Friendships have been hard to maintain when she’s been unable to get out and about and coping with a world that is not always accepting or understanding of illness has been a challenge for her.

Help for Hope and her family came in the form of a Rainbow Trust Family Support Worker, Amanda, who for the past five years has supported the whole family through some very difficult times. Visiting Hope in hospital or at home, she does arts and crafts with her or just chats. As Hope says, “Amanda makes it fun, she’s good company that isn’t my mum!” Now in the sixth form, Hope has made some good friends and wants to work with children and be a teacher.

For Sharon, Hope’s mum, the Rainbow Trust has been a lifeline, supporting the family both emotionally and practically, the latter especially with hospital appointments. With so much information to take in, having someone else there to listen and hear what the doctors are saying is invaluable. Just having Amanda to keep them company makes the sometimes very long waits at the hospital more bearable for Hope and Sharon.

For the rest of the family, Jim, Sharon’s husband, and Hope’s three siblings, Elise, and two brothers, both of whom have autism and learning difficulties, the support from the Rainbow Trust is vital. Sometimes Amanda will sit with Hope in hospital so Sharon can be at home with the boys and so Jim doesn’t have to take time off work. At other times Amanda takes Elise, 11, out for playdates or just to talk, giving her some respite from her role as a young carer.

For families like Hope’s, the Rainbow Trust has provided some desperately needed support. Thousands of other families with a very sick child also need that support. Funding for more Family Support Workers could bring help to them as well.

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Dec 4, 2018
A Festive Thank You

By Angela Francis | Project Leader

Sabrina with Sophie and her sisters

Thank you so much for supporting children with serious illnesses by funding our projects to give quality time to children and their families at a difficult time in their lives.

Sabrina is one of our Family Support Workers, in the North East Team:
“Working for Rainbow Trust humbles me, it keeps my feet on the ground and reminds me of what is important in life. The families that I support are allowing me into their lives at what is likely to be their worst times, this is precious. I support people of different ages and with different conditions and if I can make their day a little easier, help make happy memories or create a smile then it’s a job well done!”

Our Family Support Workers help children to keep up at school, as well as enjoy days out with siblings or time to talk to someone who understands what they are going through. They help the family get to hospital appointments and stay with them through long treatments, so they aren’t alone.

Sabrina supports Nicola, whose daughter Sophie was diagnosed with leukaemia two years ago:

“My husband Paul and I have three daughters and our world was turned upside down. But it was thanks to Rainbow Trust Children’s Charity that were able to face the difficult road ahead.

One morning I met Sabrina, a Family Support Worker, at hospital. She explained how Rainbow Trust helps families like mine. Within weeks, Sabrina was driving the girls to school so they didn’t miss out on their studies. It meant that Paul could go to work and I could stay with Sophie at the hospital so she wouldn’t be alone.

Soon after Sophie’s diagnosis, she was admitted to intensive care and put into a coma while her body tried to fight several serious infections. We were told that she’d have to wake up on her own, if she was going to survive. Just days before Christmas, Sabrina arrived at the hospital with presents for the girls. I’d been in hospital with Sophie so I hadn’t had time to shop and we’d all but cancelled Christmas. Then, on Boxing Day, we had the best present of all. Sophie opened her eyes.

Since then, she’s been responding so well to treatment that she’s ending chemotherapy in January. Sabrina has been with us every step of the way, giving the girls time to enjoy childhood and being there for me too, when I needed someone to talk to, who understood how difficult it was to juggle hospital, school, work and home life.”

Please spread some Christmas joy this festive season and donate to Rainbow Trust’s project to help raise funds to reach more families who are caring for a seriously ill child.

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Sep 5, 2018
Tiny Teddy's Legacy

By Angela Francis | Project Leader

Family Support Worker Fiona with Teddy and Bella

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.

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