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

Our Baby Girl

My Hope
My Hope

When my husband Dean and I went for my 20 week scan, we were told that our baby girl had a heart defect. Doctors said it was so severe that she may not survive the pregnancy and if she did survive, she probably wouldn’t live for very long. There was a surgery the doctors could do that could help if she did survive but that had its risks too.

Against the odds, she survived and that’s why we called her Hope. Hope has Ebstein Anomaly. The right side of her heart is severely deformed so the left side of her heart has to work twice as hard to keep pumping oxygenated blood around her body. When she was born, she was whisked away for heart surgery to try and repair her damaged heart.

Since Hope returned from hospital we have had to watch her constantly to monitor her condition. We needed some support so I looked around and found Rainbow Trust Children's Charity online. They came to assess us and a Family Support Worker called Eleanor started supporting us almost immediately. She’s been just brilliant. I don’t drive, so Dean had had to take time off work to take Hope and I to the hospital. Eleanor was able to take us to Hope’s regular hospital appointments and played with Tyler in the playroom while I was in with the doctors. This meant that Dean could stay at work and Tyler still had some fun, even at the hospital.

When we were home, Eleanor helped me with Hope, feeding her when Tyler needed me or playing with Tyler when Hope had appointments. It made life so much easier for us and it relieved so much of the guilt I had felt. Tyler was still getting to have fun and Eleanor’s support meant I could spend time with him on his own knowing Hope was in very safe hands.

It’s such a relief knowing there is someone there to turn to who really does understand. Hope is four now and will need heart surgery again soon. For now, Eleanor helps us give Hope a great quality of life and while she has that, we are happy.

I don’t know what we’d do without Eleanor, she has become a very special part of our lives and I know I can call on her to help whenever she can. We couldn’t do this without Eleanor or Rainbow Trust.

Oct 28, 2016

My daughter, Grace

Grace and I at the fair
Grace and I at the fair

Leanne, a Family Support Worker from Rainbow Trust’s North East team supports Darren and his family:

“Grace was 18 months old when she was diagnosed with a brain tumour. She’d been fine up until then. She was one of those children who went straight from crawling to running so when she started falling over, we thought she was just clumsy. She became less mobile and then she started having tantrums so we took her to a paediatrician but he couldn’t find anything wrong. It wasn’t until she was sick at nursery that she was rushed to A&E where they did a brain scan and we were told that Grace had a brain tumour. I was devastated.

“It all happened so quickly – she was diagnosed on the Tuesday and on Wednesday had brain surgery to remove the tumour. Watching her go through the treatment was really hard, the worst possible thing is you know it’s this terrible poison going into her body and it drained her. She was so tired.

“She needed ongoing treatment, and it wasn’t till further down the line that we started to struggle. I would stay at the hospital from 9am to 7pm then go home. My wife Fiona would then stay overnight so Grace wouldn’t be alone. Every morning we were exhausted.

“The hospital had a Rainbow Trust drop in group where we heard about how they supported families in our situation. Leanne now takes Grace out for a couple of hours to the park or soft play when she isn’t receiving treatment. It gives her some fun time and it gives Fiona and I a break to do housework, go shopping or even just sleep. It’s such a help, I honestly don’t know where we’d be without Leanne.

“I would definitely recommend Rainbow Trust and I have already. I’ve told people how fantastic and brilliant our Family Support Worker, Leanne is. We’d be lost without her. Talking to her is such a helpful release for us, she listens and the best thing is, she cares. She treats Grace like her own. I told someone on the ward the other day that the positive out of Grace’s cancer is Leanne and Rainbow Trust.”

Last year Rainbow Trust supported over 2,000 families like Darren’s, but there are still thousands of families that we could help with extra funding. Thank you for helping us to reach those new families. 

Oct 28, 2016

Monica provides a lifeline for families

Marvellous Monica!
Marvellous Monica!

“I’m Monica, a Family Support Worker in the Durham team, I have worked for Rainbow Trust for 12 years! When I’m not at work I enjoy spending time with my 22 year old daughter and my little dog, Rolo. I also like days out with friends, shopping and maybe the odd glass of wine.”

Monica provides a lifeline for families in the North East of England who have a child with a life threatening or terminal illness. Monica, works with around 15 families at any one time, and her job can involve anything from going to hospital appointments, caring for siblings or helping out with everyday jobs like shopping and school runs.

"I've worked in childcare for health and social services, so when I saw an advert for the Rainbow Trust I was really interested. It just sounded so rewarding."

Her first placement was with a young boy from Consett, who was battling cancer and sadly died six months later. "It was totally new to me going to the hospital and learning about the different types of cancer and medications. I worked with this family throughout the boy's treatment and accompanied her to appointments. She was so nervous she would come out and ask: ‘What did that mean?' and I would help explain things to her."

Monica is one of six Rainbow Trust family support workers in the North East, who provide care for families throughout their child's treatment: "We ask what parts of life they are struggling with the most – it could be things like getting the kids to school or taking them out for nice visits. It's keeping families' lives as normal as possible and giving them a good quality of life. If the child gets better we work with them for around a year afterwards, if it's a bereaved family we work with them as long as they need us."

Despite watching families struggle, and the heartache of losing some children, Monica says, "I loved the job straight away. It's a real privilege to be welcomed into a family at such a time – every day is different and doing even small things can make a massive difference to them."

Rainbow Trust has nine teams of Family Support Workers around the country from Southampton to County Durham supporting the whole family. Last year we supported 2,000 families, with support from donors like you. Thank you! 

 
   

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