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.
Nov 7, 2011

Support Rainbow Trust's work with sick children

Ana and Joysie
Ana and Joysie

Rainbow Trust's hospital support has been invaluable to Joysie Piedade's mother Ana.  Joysie was starved of oxygen at birth and faced a prolonged stay in hospital.

From the moment Family Support Worker Alison met the young family, she made a difference.  Without a car, Ana was relying on public transport to get to and from hospital.  Alison started taking the family to hospital appointments so that the time Ana spent travelling was significantly reduced and far less stressful.  She also helped by taking Ana's son Zion to school.

"I couldn't spent time with Zio as I couldn't leave Joysie alone in hospital; it was so difficult doing everything alone.  I had such a feeling of relief when I met Alison and she asked me what she could do to help.  She's wonderful to have at hospital appointments, someone else to listen to what the doctor is saying and to be another pair of eyes and hands for my two children.  Also there's someone to listen to my concerns; it can be very lonely and terrifying being a single mum."

Joysie's pushchiar didn't fit in the back of a taxi and was too heavy for Ana to take on a bus.  Alison's Rainbow Trust Kangoo was the only vehicle she could use with ease which also had space for all Joysie's breathing apparatus and suction tubes.

"When Joysie started having fits and went in and out of comas over Christmas, Alison was there for us.  She came to visit us in the hospital and brought Zion with her, also taking him to school.  It was an awful time and I tried to be strong and hope for the best but I wouldn't have been able to cope if it hadn't been for Alison's support."

There is no definite long term prognosis for Joysie and Ana is continuing to cope with the uncertainty.

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Nov 7, 2011

Bereavement support

Shona White was six and a half when she was diagnosed with a tumour at the base of the brain.  Family Support Worker Val has provided berevement support to parents Stephanie and Simon and older sister Iona since Shona's death.

"When Shona was ill, we had support from so many services, we knew so many people - doctors, nurses, community nurses, therapists to name but a few.  We got to know them all really well through the years that Shona was ill.  Understandably, when she died they had to move on and treat other patients, but it felt as though not only had we lost Shona, we'd also lost these people who had become such a big part of our lives."

"As Val had been our Family Support Worker since June 2007, she knew Shona; she knew her character, her sense of humour and what she liked doing.  Even now she will point out something that she thinks Shona would have liked.  We don't have to explain anything about Shona to Val because they knew each other.  We don't really feel the need to go to another bereavement service.  We'd have to go through Shona's whole story with someone who didn't know her.  The continuity of service which Rainbow Trust has provided is what we have appreciated the most and it's so important to us that Val knew the real Shona, not just her story.

"We had the first anniversary of Shona's death in June this year.  It was difficult, and will continue to be for many years to come, but it is reassuring to know that Rainbow Trust is still here for and with us."

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Nov 7, 2011

Supporting siblings of terminally ill children

Anthony was admitted to hospital urgently, needing brain scans and a number of emergency operations to remove part of a brain tumor.  This operation did not go as well as the medics wanted and he spent 5 weeks in hospital in a serious condition undergoing different operations on his brain.

During this time his 8 year old sister, Carolyn, stayed with her grandparents. Carolyn had become extremely withdrawn during this time. She was grieving – her mother, father and brother had left her for 5 weeks, she hardly saw them and this left her feeling isolated and worried. Do they love me? Am I important? Why don’t they come and get me?

Once Anthony was home, he was the centre of attention and had all of his relatives rallying round him and buying him new toys. Mum and dad needed to talk about what had happened and Carolyn noted and heard everything that was said. She didn’t feel important anymore. Even in the school playground, her friends, their mums, and her teachers all talked to her about Anthony.

Mum spoke to a social worker about her concerns for Carolyn. She recognised what had happened and that Carolyn needed some support. The Social Worker referred her to Rainbow Trust and a Family Support Worker came to visit the house to see Carolyn, not Anthony, nor her mum or dad.

Carolyn enjoys doing art and craft activities and is happy if Anthony joins in but knows that Carla is there for her. Carolyn also enjoys going out to the park playing games and sometimes Carla picks her up from school and they go out for their tea. Carolyn is beginning to settle down, she will talk to Carla about some of the events that have taken place but often just likes to talk about general things.

Anthony’s parents have recently been told that the tumor is continuing to grow and the medics are unsure what they can do. Carolyn sees Carla on a regular basis, who continues to work with her and support her throughout the period that she needs that special someone just for her.

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