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

Evan, Emy and Michelle

Michelle lives on the Isle of Wight. She is a single parent of two adopted children. Evan was adopted at just one week old. During the next seven months he was diagnosed by several doctors as suffering from severe colic. When the colic didn’t clear up, it was decided that he should have an MRI scan which showed that he was missing 80% of his brain tissue. It is suspected that he had a stroke while in his mother’s womb, which caused his brain to stop developing.

Evan is now four years old. He is completely immobile and totally dependent on Michelle. Michelle has been caring for Evan all this time without any support. Her home isn’t big enough to accommodate the hoists that Evan needs now that he is growing. She faces having to sell it and find suitable rented accommodation instead. Her local nursery nurses have offered some support but Michelle doesn’t feel comfortable leaving Evan with them. Evan also has a three-year-old sister, Emy, who misses out on play times and special time with Mum because she can’t leave Evan unattended.

I take Michelle and Emy to a local parent and child group and give morning support, twice fortnightly, to care for Evan so that Michelle can take some time out for herself. She is studying to become a massage therapist so that she can work from home to support herself while caring for Evan. It’s a big help for her to be able to study without having to worry about Evan for a while.

I also arranged a family stay at a hospice on the mainland so they had extra support and respite for a few days. As a single parent, Michelle told me the other day, “It has been lovely having someone to talk to, an impartial ear to unload upon and she has helped me to see the positive side of a respite stay at a hospice, not just for Evan but the whole family.”

Rainbow Trust will continue to support Michelle, Emy and Evan for as long as they need us. It isn’t clear what age Evan may live to, but our support will continue beyond, if necessary, and I will give them the chance to enjoy every single day together in the meantime.

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. 

 
   

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