Rainbow Trust Children's Charity

Rainbow Trust Family Support Workers provide emotional and practical support to families that have a child suffering from a life threatening or terminal illness. They provide access to healthcare, education, therapy, welfare support and benefits for these families at the most traumatic time of their lives together with emotional support for the whole family.
Aug 2, 2016

How Rainbow Trust supports Vicky and Rick

Having a child with a terminal or life threatening illness is difficult for any family. For most families, parents and friends can help out by giving them a much-needed break or some moral support.

But nobody wanted to look after Vicky and Rick’s sick child.

Vicky’s 22 week scan showed a dark shadow on her unborn baby’s heart. Tests revealed that the baby had heart defects and that he may not even survive birth. After a tense delivery, Samuel was born. He underwent his first open heart surgery at just four days old and his second at four months old.

Samuel's heart conditions mean that he has to be under constant supervision. For this reason, Vicky and Rick have had no time alone together since Samuel was born. None of their friends want to look after him as they are so afraid that something will happen to him while they are away. Friends and family offer to help with the other two children but no one is comfortable taking on the responsibility of looking after Samuel. His health is so fragile and this has meant that the couple are constantly under pressure to keep him calm and healthy.

Rainbow Trust Family Support Worker Sarah now supports Vicky and Rick at home, where she can watch Samuel and give Vicky time with her two daughters, Daisy and Betsy. Sarah stays all day, which is the only break that Vicky has.

“Without Sarah, I’d have no kind of break at all,” says Vicky. Samuel can be up in the night up to 25 times so having Sarah there in the daytime means that Vicky can relax just a little bit during that time.  Having that extra support makes a huge difference to the family’s exhausting routine.

The reality is that without Rainbow Trust, Vicky and Rick’s family would have little or no respite from the constant anguish of keeping their son alive. Sarah’s support gives the family a chance at normal, something that every family we work with desperately cherishes. Thank you for supporting Vicky and Rick through this project.

Aug 1, 2016

Phoebe and Ollie

Phoebe and I
Phoebe and I

When Phoebe was 14 months old, I noticed a rash on the back of her legs. Over the next few weeks Phoebe was admitted to hospital for various infections before a consultant sat us down and told us that Phoebe had leukaemia. Our whole world came crashing down.

The following day she was sent to the oncology ward where she spent the next two months as she was so poorly. My husband couldn’t go back to work as we had our three year old son, Ollie, to take care of. We tried to keep things normal for him so we took him to school but I couldn’t spend the time with him as I just wanted to be with Phoebe in the hospital. Nathan, my husband, would stay with him at home and I’d stay in the hospital with Phoebe. When I needed sleep, I’d come home and Nathan would stay in the hospital with Phoebe.

Our nurse put us onto Rainbow Trust Children's Charity – she could see we were struggling with being in the hospital and looking after Ollie. Nathan had to go back to work so it was hard.

We were introduced to Rainbow Trust Family Support Worker, Amelia - I was so happy for the help. Ollie goes to nursery two days a week so on the days he’s home, it’s a struggle. I felt like I was pushing him out which I hated but I needed to be with Phoebe. Everything was about Phoebe. Ollie would cry a lot and when he didn’t get his way, he’d kick off. I didn’t know what to do for the best so when we were referred to Rainbow Trust, I was so relieved.

Ollie was only three and he didn’t understand the situation so Amelia particularly dedicated quality time to playing with him. They got on the minute they met. He still gets so excited when I tell him she’s coming. It’s such a weight off my shoulders knowing there is someone looking after my little boy so that I can be with my sick child. Ollie loves Amelia and I think nothing of leaving her a key to collect him from school and take him home to play and then she brings him up to the hospital so he doesn’t have to be there too long.

He’s much happier now, he’s more confident and he’s more settled. Having someone there just for him has made a big difference. He can talk to Amelia and he can play with her when I am not around. She is there for him. Having someone there who you can trust with your child is amazing, I don’t know what we’d do without Amelia now. She’s just brilliant. If I know Phoebe has an appointment next week, I know I can call Amelia and ask her to fetch Ollie from school and that is such a relief for me.

Rainbow Trust take care of you and your family, not just Phoebe but Ollie and me as well. Amelia is just brilliant but I think more people need to know about Rainbow Trust. I didn’t know about them before Phoebe got sick. Amelia is just wonderful; we couldn’t do without her now. 

May 10, 2016

Super Marathon David

This Spring, 46-year-old David completed the Brighton, London and Milton Keynes marathons, on three consecutive weekends. David raised money for Rainbow Trust, who helped his family through the death of his daughter, Eloise. David first heard about Rainbow Trust when his daughter Eloise was diagnosed with a terminal illness. “My wife went into labour 10 weeks early and our twin baby girls were born premature, Eloise weighing in at just 1b 10oz and Naomi 2lb 5oz.”

At the time Naomi seemed the most sick of the two, suffering from a stomach infection. However, at one week old Eloise became seriously ill and was rushed to hospital where she was diagnosed with Necrotising Enterocolitis - a disease that affects the intestines. She had many operations, each one removing more and more of her intestines, and suffered two brain haemorrhages from all the operations, medication and treatments. It got to a stage where we just thought, enough is enough, no more. Eloise’s condition was terminal and we just wanted to take her home and look after her as much as we could, rather than see her spend her whole, short life in hospital.”

The hospital recommended Rainbow Trust and David, his wife and daughters soon met Christina from the Surrey Care Team. Christina visited the family once or twice a week overnight and watched over Eloise and her twin sister Naomi while their parents got some much needed sleep. During this time David describes Rainbow Trust’s support as a ‘God send’.

When she was 15 months old, Eloise died at home. David said: “I was trying to hold down a full time job and Eloise needed our constant attention. We learnt how to administer her medication and the complicated process of feeding her, but she needed care through the night. Just by enabling us to get a few nights rest a week, Christina’s help was immeasurable.”

When David turned 40, he signed up for his first marathon in aid of Rainbow Trust, and in memory of Eloise, as a way to fundraise for the charity which had provided much needed emotional and practical support to his family. This year’s race was David’s tenth London Marathon for Rainbow Trust. To date, David and his family have raised over £25,000 for Rainbow Trust – enough to provide over seven months of care from a Family Support Worker.

Each year David tries to come up with new challenges to keep the money coming in. “I’ve asked my friends and family for support so many times over the last seven years that I’m sure they must be getting tired of me! But I just keep plodding away, trying to come up with ideas and new challenges to inspire their continued support so the money doesn’t dry up.”

 
   

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