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.
Jan 31, 2012

How we help families with a sick child

Rainbow Trust supports families like the Khans.  Daughter Anisah was diagnosed with bone cancer when she was nine years old.  Rainbow Trust Family Support Worker Linda has supported Anisah's brother Ismael and four sisters Sameena, Maryam, Humayra and Zahra through Anisah's chemotherapy treatment and life changing operation to remove the tumour from her leg.

Her parents Zafar and Sarfraz explain the difference Rainbow Trust makes to their large family.

"The cancer wasn't just Anisah's illness, it affected the whole family.  Every one of us has changed as a result of the experience.  Rainbow helped us go through this ordeal as a family, together and stay as strong as possible.

"All of Anisah's siblings help with her care.  They go to hospital appointments with her and help support her around the house.  Her older sisters have been especially busy with her care over the holidays, putting her to bed during the day if she feels tired and making sure she is never alone in case she faints or falls.  We know it impacts on their social lives but we need their help to look after Anisah.

"Anisah's sister Maryam has just finished her A-levels, but she hasn't done as well as we thought she would.  Maryam used to love college and she was predicted really high results and wanted to be a pharmacist.  The stress and emotion of Anisah's illness meant that she didn't want to go to classes and struggled to concentrate on college work.  She's so close to Anisah, and struggled to deal with what was happening to her and what could happen in the future.  She'd sit in the library day after day, not knowing what to do.  She needed our help and support and because we were away at the hospital with Anisah, we just weren't there for her.

"Linda provides the best kind of support for Maryam and Anisah's brother and sisters, she laughs with them and takes their minds off what is going on for a couple of hours.  She listens to any concerns they have.  Linda is just trustworthy.  We're always wary of talking to outsiders about Anisah and what we're going through but both of us and the children feel very comfortable talking to Linda."

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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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