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.
May 10, 2016

Our Amazing Rainbow Vehicles

Every one of our Rainbow Trust families has a different set of needs, and our Family Support Workers are there to ensure that they receive the help that will benefit them most. Our transport support enables families to make the most of every day together.  

Since Rainbow Trust provides support to families at home and in hospital, each Family Support Worker is given an adapted car to provide a safe way for sick children and their families to travel to and from hospitals and clinical appointments.

The sliding doors make it great for access and one of my mums loves our car particularly because she is able to tube feed her daughter whilst we are travelling using the little tray on the back seat - she always remarks on the space!  The cars are big enough to transport our resources for home support, and also fit wheelchairs / buggies / equipment in. One of my families has a son who is very unsteady on his feet - the sliding door and level seat was really good for taking him out.

Claire, Family Support Worker

Many of the children we support use wheelchairs, so it is not always possible for families to use their own cars to get around. In fact, some families don’t own a car and so they would normally have to rely on public transport. This isn’t ideal, especially if the child is prone to infection, for example during a course of chemotherapy.

By driving the family to hospital, our Family Support Workers also enable families to spend time together. Mum or Dad can play with or talk to the children without distraction – this is especially important if the child is worried about their treatment or needs some one-to-one time to talk about what is going to happen at their appointment.

Family Support Workers also provide transport support to siblings so that they can be collected from school or go to their favourite after-school clubs, even if Mum and Dad are at the hospital with a brother or sister.

Often, transportation support enables one parent to stay in work and support the family, which can be difficult if a child is in hospital or receiving regular treatment. 

May 9, 2016

Elizabeth's Teenage Wish

My job is most difficult when a child dies, or when a family are told there is no further treatment to help their child. It makes me sad seeing families break up due to the stress of the situation, but I know that the support I can give will help them to make the most of their last days, weeks or months together.

A few years ago I supported a 13 year old girl, Elizabeth, who was suffering from terminal cancer. She was the same age as my daughter, so it really hit home personally to see what Elizabeth was going through.

As Elizabeth got sicker, couldn’t attend school any more, and she quickly lost touch with a lot of her friends. The ones who did visit her at home or in hospital, she felt she had nothing in common with any more. She couldn’t join in with conversations about trips to the cinema or into town on a saturday with friends. She became very withdrawn and was really very lonely.

My support for Elizabeth enabled her to be a proper teenager and experience all the things she should be doing. We would go to the cinema, go clothes shopping and get our nails done together. When her friends came to visit, instead of sitting awkwardly she could now join in and show them what she had been buying in town, saying she went with her 'best friend'.

Towards the end of her life, Elizabeth opened up to me about the fears she had about dying, but was most worried about leaving her mother and how devastated she would be. She told me she would like to leave presents for all the members of her family to be remembered by, so during the last few weeks of her life we spent time shopping to collect special presents for each family member. She made a Build a-Bear for her mother with a personal, tape recorded message of her voice inside, and we spent time hand-painting pottery and making jewellery for her grandma and aunties.

After Elizabeth died, her mother told me that I had allowed Elizabeth to experience a real teenage life, although a very short one. It comforted her to know that Elizabeth had managed to life as normal a life as possible, almost to the very end, and that she hadn’t missed out on those seemingly simple experiences that most of us take for granted.

Elizabeth’s support was made possible by kind donations to Rainbow Trust, without which I couldn’t provide this wonderful support to children like Elizabeth. I am grateful to everyone that has enabled me to do such a difficult but rewarding job. 

May 4, 2016

Lily-Rose and her brother, Baktash

Lily-Rose plays with Shirley (Southern Daily Echo)
Lily-Rose plays with Shirley (Southern Daily Echo)

As my son was dying, I needed help to support his three-year-old sister...

Baktash was eight years old when he was diagnosed with a brain tumour. Baktash had radiotherapy, as his mum, Zakia, recalls, “They told me that as long as the tumour didn’t grow he would lead a normal life”.

Six years passed and with Baktash doing well, Zakia had a daughter, Lily-Rose. However, one day Baktash had an operation on a second tumour and was rushed back to hospital soon afterwards. Zakia remembers the day vividly. “He had a CT scan and at 1am the doctor came and simply said, ‘His tumour is really bad, he’s going to die’. I was on my own with Baktash all night and I just cried.”

Zakia remembers the impact on her family. “At the time I just wanted to spend as much precious time as I could with Baktash, I wasn’t able to focus on Lily. She was struggling as I wasn’t able to do anything with her.”

Zakia was referred to Rainbow Trust Family Support Worker, Shirley. “Lily was much happier after Shirley started. Before that her life consisted of hospitals or being stuck at home. Shirley took her to places like Rainbow Trust’s Treasure Chest play room; she’s so happy when she knows she’s going there.”

Shirley was also able to help Lily cope with Baktash’s illness. This relationship proved especially important, when Baktash died. Zakia says, “I couldn’t leave Baktash alone, but Lily was upset, so I called Shirley”. When Shirley arrived the family asked her to speak with Lily and explain to her what had happened, since they had such a strong bond.

Shirley still takes Lily to places like the Treasure Chest. She is also there for Zakia when she needs to talk about Baktash, and she will be there for the whole family, for as long as they need her. 

 
   

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