Physical Health United Kingdom Project #23589

Sponsor a Family Support Worker for Sick Children

by Rainbow Trust Children's Charity

Project Report | Mar 12, 2018
A Very Special Aunty

By Jenny-Anne Dexter | Project Leader

Joseph, Sheniece and Selff on a day out

No parent expects to outlive their child, but for many of the families Rainbow Trust Children’s Charity supports this is a real possibility. Rainbow Trust is there every step of the way, supporting families caring for a child with a life threatening or terminal illness during diagnosis, treatment and, if needed, through bereavement.

One mother whose 13-year-old son died last year is so inspired by the support her whole family has received from Rainbow Trust that she wanted to share their story to highlight the charity’s work and the difference it has made to their lives.

Magdalene, a single mum, is able to reminisce about her son Joseph with her other two children and their father Joseph. She has also managed to return to work, thanks to the help they have had from her Family Support Worker, Amanda.

“Rainbow Trust has been with us throughout,” Magdalene said. “Amanda has been very supportive and I wish I could have her in our lives forever. She’s part of the family.”

Amanda began supporting the family after Joseph, known as Joey, was diagnosed with osteosarcoma, or bone cancer, of the left leg in 2015 when he was 12 years old. Joseph had his leg amputated and a prosthetic leg fitted but the cancer spread all over his body and he died on 30 April 2016.

Before Joseph died Amanda spent time with the whole family, taking Joseph’s brother Selff, aged 12, and his seven-year-old sister, Sheniece, to school when Magdalene was at hospital with him. Amanda, who the family affectionately call Auntie Mandy, took the family to hospital appointments as Magdalene did not drive then and Joseph found it difficult to walk.

“Joseph loved Aunty Mandy. She gave Joseph activities when he came home from hospital and she sat with us and we all talked,” Magdalene said.

Now, Amanda continues to support the whole family by taking Selff and Sheniece out on day trips. Her bereavement support has helped the family enormously, giving Magdalene the confidence to pass her driving test and return to work and perhaps, most importantly, helping them to grieve and remember Joseph.

Magdalene said: “Mandy takes the children everywhere. Sheniece loves to play and if I tell her she’s seeing Mandy she is so excited. She has enabled me to go back to work. Without Mandy I would be staying at home.

“We can all talk to Mandy about anything. When the kids go to school and when I am not working I’m in the house alone so Mandy comes in and we sit and talk and I have company. We all love talking about Joseph. He was young and vibrant with a broad smile and he was always laughing. His school have been very supportive and helped us to mark Joseph’s life by organising a memorial service in July last year which was very special.”

“We have been inspired by Rainbow Trust and we want other families to be open to getting help from them. It’s tough and difficult and we have to get on with life but Rainbow Trust are always there. They have enabled us to talk and laugh again. I want everyone to help Rainbow Trust flourish and for families to get that help as well. I really appreciate Rainbow Trust. All I have to do is call Aunty Mandy.”

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Dec 13, 2017
Our Frank

By Jenny-Anne Dexter | Project Leader

Frank during treatment

Frank was just three and a half years old when he had his first seizure. A year later after many more seizures, Frank was diagnosed with Late Infantile Batten Disease, a rare degenerative condition. Four years later Frank is unable to see, speak, smile or move, is fed through a tube and needs help to breathe.

Before his diagnosis, Frank loved playing on the beach, climbing in the local park and jumping on the trampoline with his brother and sister, Kirk and Mae.

Struggling to cope after Frank’s devastating diagnosis, Rachel and Bob, his parents, were referred to Rainbow Trust Children's Charity.

Luci, their Family Support Worker, helps with everyday activities like taking Frank to the park. He is completely dependent and his complex needs make just leaving the house difficult. But with Rainbow Trust’s support, Frank can use and enjoy activities other children his age enjoy.

Luci supports the whole family and recently helped Mae, Frank’s older sister, make a collage of photos celebrating Frank’s life. Mae enjoyed doing it with Luci and the collage is something the family will cherish forever.

“Luci supported us when Frank had pneumonia and was in hospital for three weeks. She visited with coffee and cake and brought books to read to Frank and gave me some much needed respite,” said Rachel.

Luci helps with everyday activities like taking Frank to the park, accompanying him to hospital appointments and reading stories to him. Luci also goes on long walks with Rachel, providing her a neutral space to talk about the stresses of family life.

“Having someone to talk to makes such a difference. Most people don’t understand the demands or know how to help so having someone who does means so much and really reduces the sense of isolation", says Rachel.

When Frank was referred to a children’s hospice, Luci visited regularly and encouraged Rachel to leave Frank’s side for a few hours to get some breathing space, and find time for herself. Rachel describes her time with Luci as the “best therapy.”

The outlook for Frank is sadly not a positive one, however, Luci and the rest of the Rainbow Trust team will support the entire family and remain in their lives for as long as we are needed.

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Oct 10, 2017
Hannah's Fighting Spirit

By Hannah | Trainee Nurse

Hannah studying hard

I thought I was going to die; Rainbow Trust gave me the fighting spirit to recover.

To be told you have a tumour that may kill you is hard. That is what happened to me just before my fifteenth birthday. I had a tumour the size of a rugby ball growing in my liver.

I was okay with the news at first. I wasn’t scared but seeing my mum, who is normally so strong, break down and cry was really tough. It only sank in the day I walked onto the oncology ward and saw the other sick children.

It was a huge shock starting chemotherapy. The treatments were exhausting. I was so weak, I couldn’t walk. I was stuck in hospital for six months. My friends from school visited lots. I remember the first time they saw me. I was bald and I had a tube in my nose. They all stood in the doorway and didn't want to come in. They couldn't look me in the eye and stared at the walls, the floor, anywhere but at me. I was so frustrated that they couldn't see that I was the same person as before I became ill.

I first met Rainbow Trust after the operation to remove the tumour. My Family Support Workers, Monica and Vicky, were amazing. We never talked about the fact that I may die, they just made me laugh and gave me my independence back. Having someone to look after me also meant mum could return to work.

I owe my GCSEs to them. I don't think I would have been able to go back to school without their support. I remember getting dressed in my uniform one day and feeling positive about seeing my friends but when I came downstairs I couldn't do it. I burst into tears. Monica and Vicky arranged for me to go in for a few hours at a time so that I could get used to things again and even came to lessons with me. That made all the difference.

I’ve overcome a lot in my life, but I couldn’t have done it without the support of Rainbow Trust.

Rainbow Trust doesn’t promise to provide answers or cures, just the silent support that many of us take for granted. I know I did before I got sick. Most organisations came to us with a list of things they can help with but Rainbow was different. They asked what help we needed and they provided it. This makes them unique.

I’m 21 now. I am fit and healthy and even ran my first Great North Run this year. With the help of Rainbow Trust, I am now studying to be a children’s nurse, because I saw what all those nurses and health professionals did for me as a teenager. I have been working with children throughout my training and when I’ve had a teenager or parents who are challenging, I can understand why they are being and feeling that way. I can put myself in their shoes because I know I felt like they did.

When I qualify I will be based at the Royal Victoria Infirmary in Newcastle, the hospital in which I spent most of the year I had cancer.

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