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.
Oct 30, 2016

My son, Jack

Jack at the football club
Jack at the football club

No parent expects to outlive their child, but for many of the families we support, this is a real possibility.

Four-year-old Jack Robinson passed away peacefully, a few months following diagnosis of an inoperable brain tumour. Given only a five per cent chance of survival, his heartbroken family were determined to make the most of their time with him. Supported by Rainbow Trust Children’s Charity, his parents, sisters and twin brother worked hard over his last few months to make his final wishes come true. 

“At that point, I had hit rock bottom and I needed someone to talk to. The thought that my child was going to die was too much. The hospice staff contacted Rainbow Trust on my behalf and a few hours later, Dawn, a Family Support Worker from Rainbow Trust, called and arranged her first visit.

“Dawn visited two or three times a week and, initially, came to play with Liam, Jack’s twin brother. I was worried about him as I had spent so much time away from him being in the hospital with Jack. Even now when I think about it, I feel so desperately guilty about leaving him but Jack needed me more. I couldn’t have left him in the hospital attached to tubes and machines all by himself. Dawn, became Liam’s first port of call. She took him out and spent time with him doing things that he enjoyed which gave me some much needed respite.

“Jack died on 1 April just after midnight. I called Dawn in the morning and she came over and spent the day with us.

“I spent a lot of time talking to Dawn about Jack’s funeral, about what I wanted to do for him. Dawn came to Jack’s funeral and has been with us ever since. Most charities leave after the child dies but Dawn never left – the hurt will never go away so having Dawn stay with us has been so special to us.

“I honestly don’t think we’d all be together as a family if she hadn’t been with us. She helped us stay together, she helped ease the tension that built up around us in our grief. Dawn was there for each and every one of us.

“I’m just so glad and grateful to have had someone here for all of us, thank you Dawn and thank you Rainbow Trust. I know they will be there for us if ever we need them."

Oct 30, 2016

Looking forward to Christmas at home

Dawn and Louis in the park
Dawn and Louis in the park

Having twins is a handful but having one that is unwell is even harder. Spreading and sharing your time becomes your priority while trying to tend to your unwell child. Simple things like bathing your new babies and their brother can be terribly stressful.

My son Charlie was born last year with an as-yet undiagnosed condition. Sadly he was too unwell to come out of hospital for Christmas so I left a stocking on the end of his cot on Christmas Eve and went home to be with my husband, Charlie’s twin brother Louis and older brother Jacob. I did all the bits with Jacob like putting food out for Santa and the next day we went back to the hospital to be with Charlie. It wasn’t the Christmas I’d planned, but at least we were together for part of the day.

Just before we were discharged from hospital in February this year, our Community Nurse recommended Rainbow Trust. I knew we’d need as much help as possible when we went home so I agreed. Dawn, one of Rainbow Trust’s Southampton Family Support Workers, came to see us and did an assessment. I really liked her and felt we would get on with her. She visited us three times a week, which took that pressure off of me just having someone else there to help. She’s like having a big sister, she just slots in – I don’t feel like she’s a visitor, she just gets on with it and I trust her, I trust her with my children and especially Charlie who has such special needs.

Dawn spends time with Jacob, giving him one to one time so that he feels special again. She’s also taken him for days out with other children, which has been great for him. Jacob can talk to Dawn about anything that’s bothering him and he knows that she is there for him. That makes such a huge difference to me – it’s been hard for him. When I was rushing around doing things, he told me, “Mummy you don’t listen to me anymore,” and he’s got a valid point. Having Dawn means he has someone special who does listen to him.

She's been amazing. Things would have been so much harder without her. She takes care of Jacob and Louis while I feed or bath Charlie. She also helps out when I have hospital appointments with Charlie. She’ll collect Jacob from school and look after him and Louis so I don’t have to worry about entertaining three children while I speak to doctors about Charlie.

I am really excited about Christmas this year, the idea of having us all together is magical for me. We are going to make a big thing of it as last year just didn’t feel like Christmas. But this year will be special, having all three boys with us at home.

Dawn’s help is like a lifeline, just having someone else to turn to, to talk to and to help with all the little things makes a huge difference to my family.  I’d definitely recommend Rainbow Trust to other people in a similar situation, I trust Dawn with my family and I wouldn’t want to be without her.

Thank you for making it possible for Rainbow Trust to make a difference to families like mine. 

Oct 30, 2016

Nicki & Francesca

Francesca with Nicki at home
Francesca with Nicki at home

When Francesca was less than a year old, doctors discovered a cancerous tumour in her cheek.

The tumour is wrapped around the optic nerve and main artery to the brain so cannot be completely removed. In addition to the cancer Francesca also suffers from a rare neurological condition that prevents her from being able to smile, eat properly or speak clearly. 

Francesca's family were referred to Rainbow Trust mid-way through Francesca’s chemotherapy. They met Family Support Worker Nicki who immediately started supporting them when they needed her. Her mum, Liz says, “Nicki helps a lot with the hospital appointments. She drives us both there and also spends time with us when we are in hospital. Francesca is often not allowed to eat or drink when she is in hospital and as she needs someone with her at all times, that means I can’t eat or drink when I am around her as it’s not fair. Having Nicki there means I can pop off for half an hour and have a coffee or something to eat, knowing that someone Francesca knows and trusts is still there with her.

“Nicki is always there for us, taking the stress out of the day and entertaining Francesca whilst I talk to the various consultants. Even if we don’t have hospital visits, Nicki comes to see us each week to play, chat and keep us company. She also spends time with our older daughter Imogen when she is not at school Without Rainbow Trust and the support they have given to us, we would have never got through the past five years.”

Things have been hard for the family. Francesca couldn’t go to nursery because her treatment meant that she was unable to fight infection and even a common cold would be life threatening , Liz was therefore not able to go back to work. They had to sell their house as they could no longer afford the mortgage on one salary. Liz says, “We’re taking it in our stride. Cancer is not discriminatory, it can affect anyone. We worked hard to get where we were and although we’ve had to take a step back to where we started on the property ladder, it can be considerably worse for some families”.

Family Support Worker Nicki has been ever present through the past few years. Liz says, “It’s difficult to quantify that kind of help, it’s so very important. We really notice it when Nicki isn’t around.”

Last year Rainbow Trust provided 6,566 hours of hospital support, helping to organise appointments, explaining illnesses and treatment, looking after siblings, staying with sick children and supporting families in neonatal units.

 
   

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