Supporting Terminally Ill Children

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.”