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 13, 2013

News from a Rainbow Trust Supported Family

I always think it is good for our supporters to hear from Families that we support, so here are a few words from David Bara.

I’m a dad and my little girl Adi,has cancer. Sharing my story with you today is my way of publicly thanking Rainbow Trust for all their support and to show how vital your donations are in helping dads like me cope.

Adi is only two years old but is very aware that something strange is happening to her body. Her brain tumour was aggressive and, even though all but a tiny piece had been removed, they could still only give her a 35-50 percent chance of surviving the next five years.

The nights apart are horrendous
My wife spent every night with Adi whilst she was in hospital and I was at home trying to keep a sense of normality for our son Asher. Searching to find soothing answers to his questions about where his mummy and sister had gone.

Struggling to cope with Adi’s cancer
The hospital appointments, operations, tests and waiting become your reality, your every day life. It is exhausting but I must make Adi as happy as possible so she is in the best psychological state to fight the cancer. Sometimes I am so tired it is a strain to keep smiling. Alison, our Family Support Worker helps with this a lot. She spends fun hours with Adi; they paint, read stories together and laugh a lot. She is there when we need her.

How you can make a difference
In all honesty, I have no idea what the year ahead will bring. It will be challenging, tiring and so much more. Thanks to Rainbow Trust we have a great team behind us no matter what. Rainbow Trust relies almost entirely on the generosity of voluntary donations from individuals like you to make sure that the service families like mine receive is available 24-hours a day, 365 days a year. I am overwhelmed by the professional care we have received. Rainbow Trust need to raise £10,000 to provide 500 hours of support for families at the hospital, at home and to worried siblings. Please help my family to say thank you and support other families in need.

David Bara

Jun 13, 2013

News from a Raiinbow Trust Supported Family

I always think it is good when our supporters can hear from families that we support, so here are a few words from David Bara.

I’m a dad and my little girl Adi, pictured above, has cancer. Sharing my story with you today is my way of publicly thanking Rainbow Trust for all their support and to show how vital your donations are in helping dads like me cope.

Adi is only two years old but is very aware that something strange is happening to her body. Her brain tumour was aggressive and, even though all but a tiny piece had been removed, they could still only give her a 35-50 percent chance of surviving the next five years.

The nights apart are horrendous
My wife spent every night with Adi whilst she was in hospital and I was at home trying to keep a sense of normality for our son Asher. Searching to find soothing answers to his questions about where his mummy and sister had gone.

Struggling to cope with Adi’s cancer
The hospital appointments, operations, tests and waiting become your reality, your every day life. It is exhausting but I must make Adi as happy as possible so she is in the best psychological state to fight the cancer. Sometimes I am so tired it is a strain to keep smiling. Alison, our Family Support Worker helps with this a lot. She spends fun hours with Adi; they paint, read stories together and laugh a lot. She is there when we need her.

How you can make a difference
In all honesty, I have no idea what the year ahead will bring. It will be challenging, tiring and so much more. Thanks to Rainbow Trust we have a great team behind us no matter what. Rainbow Trust relies almost entirely on the generosity of voluntary donations from individuals like you to make sure that the service families like mine receive is available 24-hours a day, 365 days a year. I am overwhelmed by the professional care we have received. Rainbow Trust need to raise £10,000 to provide 500 hours of support for families at the hospital, at home and to worried siblings. Please help my family to say thank you and support other families in need.

David Bara

Mar 15, 2013

Family Support Workers

As many of our supporters aren’t too sure what our Family Support workers actually do for the families we support, we asked one of our FSW’s to give a quick run down on a couple of her current cases.  

 I thought I would give you a snapshot of the families I am supporting; it is very varied and will give you an insight in to what I do.

 George has had a brain tumour and I have been working with him since he was 3 months old. He has not finished his treatment and mum and dad are finding it difficult to cope with his rehabilitation as he doesn’t walk or talk.  Dad works full time and mum does a lot of the care herself.   George is now 3 years old  and the family have a one year old baby Fred, and it is difficult because the baby can do more than George can do and I have got involved in taking mum to an Early Years Centre and helping her get to know other families.  It is hard as mum is slightly agoraphobic, I‘m uncertain whether she was before George’s problems or this is something that has come on following George’s diagnosis.

 I take mum, George and Fred to the centre but I am gradually weaning myself away from mum to empower her to be more proactive with the other families as she is very nervous but I am still there on the outskirts though gradually backing away.  If it wasn’t for me she wouldn’t get on a bus and take George and Fred by herself.  So whilst mum and George integrate with the other families I get time to spend with Fred.

 George’s next scan at GOSH is due in March and unfortunately the type of brain tumour he had is likely to come back, so I will be supporting the family during this time.

 I phone mum and try to see the family at least once a week and support them at all their hospital appointments.

 I have another family you may be interested in, there’s mum, dad, brother Colin and Ann who has cancer of the eyes.  I have been working with them now for the past year.  Mum and dad don’t ask for much really, what they need and what works for them is I go in and support the family.  I leave my house very early in the morning (4.30 am) to get to the house at 6 am so mum and dad can take Ann to London for her treatment.  If dad can’t take the time off work, I would then drive her up to London, but on the whole I am mainly supporting Colin the healthy brother and as I walk in mum and dad have the car engine running and they are off.

 I then stay in the house and it enables mum and dad to go with Ann for her treatment and not have to worry, it also means Colin can stay in bed and bit longer.  I wake him up, get him washed and dressed and make him breakfast and take him to school.  Mum is really, really adamant that Colin’s education is not affected by Ann and her illness and nor is Colin as a person.  Colin is a very confident little boy and this is what works for this family. 

 I normally call mum after I have dropped Colin at school and leave a message to let her know everything is alright. 

 I find it so interesting that I have so many different families the only link between them all is they have a poorly child.

 So everybody deals with it differently so I bend and flex with them whatever way they want, which keeps me on my toes and is never boring.

 Then there’s Jenny, I may have told you about this family before.  She had a brain tumour then relapsed and had radiotherapy.   Mum is very concerned and upset as she is having lots of problems at school, she isn’t coping with the work and she should be in year one but has gone back down to reception class where her younger sister is and unfortunately she is still struggling with the work . 

 I was concerned and checked with mum when her next scan was due as I fear maybe something was back, mum contacted the hospital and it appears that she may be struggling due to the radiotherapy she has had.  Radiotherapy whilst great at killing the cancer unfortunately also can affect other cells and being unable to cope with school work may be a result of that. 

 Mum is very concerned as she is having trouble dressing herself; she has to tell her when to drink and eat so there is something going on.    Dad has gone back to work but mum is finding it really hard, she said to me she felt like everybody had pulled out, which is what happens at the end of a treatment, except for Rainbow, and she is left to get on with it.

 For now we just hope that Jenny picks up.

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