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."

Links:

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."

Links:

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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