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."
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."
This year Rainbow Trust celebrates its 25th anniversary. Founded in 1986, we have now supported thousands of families who have a child with a life threatening or terminal illness. With the help of the families who share their inspirational stories about the difference Rainbow has made to their lives, we have been able to raise our profile and tell more people about the valuable work that we do.
From the humble beginnings of two staff and a kitchen table to work from, Rainbow is now a national charity and supports over 1,000 families across England. Thanks to the dedication and hard-work of staff and volunteers, Rainbow continues to grow year on year and makes progress towards achieving its vision that one day all terminally ill children and their families will have access to a Rainbow Trust Family Support Worker.
To mark this anniversary, Rainbow will be holding special profile raising fundraising activities to make this year our most successful yet.
“Very often, parents caring for a child with a life threatening or terminal illness have very little frequent or close contact with friends or family outside the household. Few families have the luxury of being part of an active social network, providing them with moral support during times of emotional trauma and grief. Professional support is available for such families, but often exists outside the family home, making it difficult and strenuous to take part on a regular basis. Such isolation is incredibly debilitating.” Vivien Hollis, Early Support Coordinator for Bath and North East Somerset Children’s Services
This is the story of Tamiya, who is four years old and has a degenerative heart condition and is terminally ill and her mother single parent Maria, who is currently supported by our Bristol based Family Support Worker:
“I’m going through the worst thing someone can go through. Friends don’t understand and I don’t have anyone else. Rainbow Trust makes me feel that it’s OK to be upset and not to know what to do; they are there to support me and help me through this. I don’t know now what I’d do without them in my life.
“I don’t have any kind of support network. I did have a few friends but since Tamiya has been ill, they really haven’t been supportive. They don’t understand that I can’t always stick to a plan because my daughter might be ill. My Family Support Worker really showed me that she wanted to support me though, so it became easier to talk to her. I don’t have anyone else I can talk to so sometimes it feels like I’m going to burst; I get desperate for some comfort from someone. I once called the Rainbow Trust help line late at night; I felt so overwhelmed with emotion that I had to talk to someone. I thought as it was past working hours I wouldn’t get through to anyone until the morning but I was speaking to my Worker less than five minutes later. I can’t put into words how much that phone call meant to me. I needed to speak to someone so badly and my Family Support Worker was there for me in a dark time.”
Two year old Malachi Tyler was diagnosed at birth with Neurofibromatosis, a genetic condition which varies from one person to another even in the same family. Some people will be mildly affected with very few health problems while others will have some serious health problems making their daily life difficult.
When Malachi was just one, his parents first noticed that he was walking around furniture and he was diagnosed with muscle hypertonia and a MRI Scan was arranged at St Thomas Hospital in London.
Four out of six of Malachi’s siblings have NF of varying degrees so mum Emma wasn’t unduly worried when they were told that he had the same genetic condition. About two weeks after the scan, Emma received a call from the hospital to say that they would like to see them the following day. “I was very scared when doctor wanted us to go the following day. It was too much for me to bear and I wanted to know more there and then; there was no way that I could wait until the following day.” The doctor said that scan results showed Malachi had an optic glioma; a tumour that grows in various parts of the brain. The family went to the hospital the next morning and were told that their son had no sight in his left eye and limited sight in his right and that further deterioration should be expected. Malachi was immediately referred to the Royal Marsden Hospital in South West London to receive his chemotherapy and that’s where the family first heard about Rainbow Trust. Tori, one of the Surrey care team workers was assigned to the family and since that time, the family has never looked back.
At the end of last year, the worst happened. Emma noticed that Malachi was now walking into furniture and called the hospital for an urgent appointment. They confirmed what Emma knew, Malachi had gone completely blind, “Even though I knew that Malachi had lost his sight, it was a sad day when we got it confirmed by the doctors.”
“Over the last year, we’ve had some pretty dark days and we were all thankful that Tori was there to share them with us. When Tori visits, she will spend time with Malachi’s other siblings and has built up such a good rapport them all. Also Graham and I are grateful for her for the support she gives to us. She will pick up and take the children to school and has taken Malachi to hospital when we’ve not had access to a car. I know that I can call Tori whenever I need her if I need someone to talk too. We really appreciate the care and support Rainbow Trust has given us, in fact, I don’t know how we would have survived without it!”
Tori said: I enjoy working with the Tyler family because they really do utilise me and I believe that I’m making a real difference to the family and that’s what it’s all about.”
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