Supporting Terminally Ill Children

by Rainbow Trust Children's Charity
Vetted
Jack at the football club
Jack at the football club

No parent expects to outlive their child, but for many of the families we support, this is a real possibility.

Four-year-old Jack Robinson passed away peacefully, a few months following diagnosis of an inoperable brain tumour. Given only a five per cent chance of survival, his heartbroken family were determined to make the most of their time with him. Supported by Rainbow Trust Children’s Charity, his parents, sisters and twin brother worked hard over his last few months to make his final wishes come true. 

“At that point, I had hit rock bottom and I needed someone to talk to. The thought that my child was going to die was too much. The hospice staff contacted Rainbow Trust on my behalf and a few hours later, Dawn, a Family Support Worker from Rainbow Trust, called and arranged her first visit.

“Dawn visited two or three times a week and, initially, came to play with Liam, Jack’s twin brother. I was worried about him as I had spent so much time away from him being in the hospital with Jack. Even now when I think about it, I feel so desperately guilty about leaving him but Jack needed me more. I couldn’t have left him in the hospital attached to tubes and machines all by himself. Dawn, became Liam’s first port of call. She took him out and spent time with him doing things that he enjoyed which gave me some much needed respite.

“Jack died on 1 April just after midnight. I called Dawn in the morning and she came over and spent the day with us.

“I spent a lot of time talking to Dawn about Jack’s funeral, about what I wanted to do for him. Dawn came to Jack’s funeral and has been with us ever since. Most charities leave after the child dies but Dawn never left – the hurt will never go away so having Dawn stay with us has been so special to us.

“I honestly don’t think we’d all be together as a family if she hadn’t been with us. She helped us stay together, she helped ease the tension that built up around us in our grief. Dawn was there for each and every one of us.

“I’m just so glad and grateful to have had someone here for all of us, thank you Dawn and thank you Rainbow Trust. I know they will be there for us if ever we need them."

My job is most difficult when a child dies, or when a family are told there is no further treatment available, but I know that the support I can give will help them to make the most of their last days, weeks or months together.

I supported a 13 year old girl, Elizabeth, who was suffering from terminal cancer. She was the same age as my daughter at the time, so it really hit home to experience what Elizabeth was going through.

Towards the end of her life, Elizabeth opened up to me about the fears she had about dying, but was most worried about leaving her mother, and how devastated she would be. She told me she would like to leave presents for all the members of her family to be remembered by, so during the last few weeks of her life we spent time shopping to collect special presents for each family member. She made a Build a-Bear for her mother with a personal, tape recorded message of her voice inside, and we spent time hand-painting pottery and making jewellery for her grandma and aunties.

My time with Elizabeth was made possible by kind donations to Rainbow Trust, without which I couldn’t provide this wonderful support to children who need it. I am grateful to everyone that has enabled me to do such a difficult but rewarding job.

Thank you for supporting our vital work with your donations.

This Spring, 46-year-old David completed the Brighton, London and Milton Keynes marathons, on three consecutive weekends. David raised money for Rainbow Trust, who helped his family through the death of his daughter, Eloise. David first heard about Rainbow Trust when his daughter Eloise was diagnosed with a terminal illness. “My wife went into labour 10 weeks early and our twin baby girls were born premature, Eloise weighing in at just 1b 10oz and Naomi 2lb 5oz.”

At the time Naomi seemed the most sick of the two, suffering from a stomach infection. However, at one week old Eloise became seriously ill and was rushed to hospital where she was diagnosed with Necrotising Enterocolitis - a disease that affects the intestines. She had many operations, each one removing more and more of her intestines, and suffered two brain haemorrhages from all the operations, medication and treatments. It got to a stage where we just thought, enough is enough, no more. Eloise’s condition was terminal and we just wanted to take her home and look after her as much as we could, rather than see her spend her whole, short life in hospital.”

The hospital recommended Rainbow Trust and David, his wife and daughters soon met Christina from the Surrey Care Team. Christina visited the family once or twice a week overnight and watched over Eloise and her twin sister Naomi while their parents got some much needed sleep. During this time David describes Rainbow Trust’s support as a ‘God send’.

When she was 15 months old, Eloise died at home. David said: “I was trying to hold down a full time job and Eloise needed our constant attention. We learnt how to administer her medication and the complicated process of feeding her, but she needed care through the night. Just by enabling us to get a few nights rest a week, Christina’s help was immeasurable.”

When David turned 40, he signed up for his first marathon in aid of Rainbow Trust, and in memory of Eloise, as a way to fundraise for the charity which had provided much needed emotional and practical support to his family. This year’s race was David’s tenth London Marathon for Rainbow Trust. To date, David and his family have raised over £25,000 for Rainbow Trust – enough to provide over seven months of care from a Family Support Worker.

Each year David tries to come up with new challenges to keep the money coming in. “I’ve asked my friends and family for support so many times over the last seven years that I’m sure they must be getting tired of me! But I just keep plodding away, trying to come up with ideas and new challenges to inspire their continued support so the money doesn’t dry up.”

Jack on a family outing
Jack on a family outing

Jack was ten when he was diagnosed with a mitochondrial disorder. Most of Jack’s care fell to his mum, Dee, as his dad worked long hours to support the family. Jack had a younger brother, Luca.

Family Support Worker Bryan changed the lives of Jack and his family from day one. He arrived at a time when the family needed it the most, and they were at their lowest. Bryan made daily life more normal for the family, as he was quickly trusted to look after Jack as well as he needed to be looked after. Bryan’s hands-on support enabled the family to enjoy outings which gave them time to be a ‘normal’ family again.

Dee mum said, “It was like a ray of sunshine when Bryan came, full of vitality, enthusiasm, compassion and a great caring nature made him a winner in the household. There were always beams of smiles from Jack when Bryan arrived, and laughter around the house.

“We managed outings to parks and bowling trips, which have been a hit. He managed to combine all the skills of a companion, carer and playmate to both boys as well as a good listener to a worried mum. It was a huge relief that at last we could rely and trust someone who could look after Jack as well as we did. It is not easy to let your child be looked after by someone other than yourself when that is all that you have.”

Sadly, Jack died aged 16.

Rainbow Trust is the only organisation to care for families from diagnosis, during treatment, and if needed, through end of life care, bereavement and beyond.  This support is not available elsewhere. 

“There’s still that connection with Joe when Chris comes.  There isn’t anybody else that comes in who knew Joe before.”

Sue, Joe and Adam’s mum 

Joe’s story

In 2007, Joe, aged nine, started feeling sick.  A scan revealed a large brain tumour.  Most of the tumour was removed and chemotherapy and radiotherapy treatment was successful.  However, in 2012, the cancer returned in his spine and the following autumn, Joe was not able to walk and he stopped going to school.  His family was referred to Rainbow Trust for support. 

Chris, a Family Support Worker from our Swindon team began supporting his family.  Joe wanted to record the time they shared, so together with Joe’s younger brother, Adam, they made a photo book about their adventures. 

Joe managed to see the album finished, before he died earlier this year, aged 16.

 

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Organization Information

Rainbow Trust Children's Charity

Location: Leatherhead, Surrey - United Kingdom
Website: http:/​/​www.rainbowtrust.org.uk
Project Leader:
Jenny-Anne Dexter
Leatherhead, Surrey United Kingdom
$42,780 raised of $80,000 goal
 
738 donations
$37,220 to go
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