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.
Jun 7, 2016

Me and My Family Support Worker

Amelia and I
Amelia and I

 My name is Erika, I'm 17 years old and I'm currently in hospital. I suffer from a disease called Idiopathic Pulmonary Arterial Hypertension. I've had it since the age of 13 and I wish I didn't. 

It is a chronic and life changing heart and lung condition. My heart works less effectively than yours. Just walking is a task for me, I walk at a slow pace and have to stop often to catch my breath. I also suffer from breathlessness, dizziness, feeling faint, chest pain and tiredness.

I am supported by Rainbow Trust Children’s Charity, they help me and my family cope with my illness.

You can help Rainbow Trust fund more Family Support Workers so that young people like me have someone to talk to about their hopes and fears, while they cope with having a life threatening or terminal illness.

My Rainbow Trust Family Support Worker, Amelia, is absolutely incredible.

When you’re chucked into a situation that you weren’t expecting, you feel totally alone. I don't take to new people very well but Amelia is just amazing and we just click. 

Amelia’s not a friend, she's not family. She cares, but in a different way, so you're not afraid to tell her how you're feeling. When you speak with family and friends, you're worried. You're scared because you don't want them to be sad, or be reminded that you are ill. All you want is to have a nice day, so you don't really want to talk about it.

I'm able to enjoy myself more because I have Amelia to talk to. We laugh 90% of the time, we smile a lot, and we talk often, and that's the best way to be. She can't take my disease away, but she can be there for the bad days, to make everything easier and a lot more enjoyable.

Without Amelia, I'm not really sure where I'd be.

I'm so glad I could write to you to help raise awareness, because without people supporting Rainbow Trust, I have no Amelia, and without her I have no support. Mum agrees that it’s exactly the support we need right now, though in the future we may need more help, and I know that Rainbow Trust will still be there when I need Amelia more.

I worry about the families that don’t have a Family Support Worker like Amelia. There are still thousands of families just like mine that need one right now. By donating to Rainbow Trust, you can give ‘an Amelia’ to more people who need them.

Erika

May 10, 2016

Super Marathon David

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.”

May 10, 2016

Our Amazing Rainbow Vehicles

Every one of our Rainbow Trust families has a different set of needs, and our Family Support Workers are there to ensure that they receive the help that will benefit them most. Our transport support enables families to make the most of every day together.  

Since Rainbow Trust provides support to families at home and in hospital, each Family Support Worker is given an adapted car to provide a safe way for sick children and their families to travel to and from hospitals and clinical appointments.

The sliding doors make it great for access and one of my mums loves our car particularly because she is able to tube feed her daughter whilst we are travelling using the little tray on the back seat - she always remarks on the space!  The cars are big enough to transport our resources for home support, and also fit wheelchairs / buggies / equipment in. One of my families has a son who is very unsteady on his feet - the sliding door and level seat was really good for taking him out.

Claire, Family Support Worker

Many of the children we support use wheelchairs, so it is not always possible for families to use their own cars to get around. In fact, some families don’t own a car and so they would normally have to rely on public transport. This isn’t ideal, especially if the child is prone to infection, for example during a course of chemotherapy.

By driving the family to hospital, our Family Support Workers also enable families to spend time together. Mum or Dad can play with or talk to the children without distraction – this is especially important if the child is worried about their treatment or needs some one-to-one time to talk about what is going to happen at their appointment.

Family Support Workers also provide transport support to siblings so that they can be collected from school or go to their favourite after-school clubs, even if Mum and Dad are at the hospital with a brother or sister.

Often, transportation support enables one parent to stay in work and support the family, which can be difficult if a child is in hospital or receiving regular treatment. 

 
   

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