Support Families Who Have a Terminally Ill Child

by Rainbow Trust Children's Charity
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Support Families Who Have a Terminally Ill Child
Support Families Who Have a Terminally Ill Child
Support Families Who Have a Terminally Ill Child
Five years cancer free!
Five years cancer free!

On Sunday 3 June families around the UK celebrated National Cancer Survivors Day. Among them was McKenzie and his family. McKenzie has now been cancer-free for five years.

To celebrate, McKenzie wore a specially made t-shirt to school celebrating his cancer free status. Rainbow Trust Children’s Charity has been supporting the family since McKenzie was first diagnosed with stage 4 neuroblastoma in 2011, when McKenzie was just two years old.

“We were introduced to Dawn, one of Rainbow Trust’s Family Support Workers, in the hospital playroom just six weeks after the diagnosis, and she asked us how she could help. I told her I wanted someone to play with McKenzie’s brothers and sisters and bring some fun back into their lives. Dawn and the children clicked immediately. The time Dawn spent with the children meant I could do simple tasks like the shopping without having to take the five children along. Or when McKenzie was in hospital – sometimes for months at a time - Dawn was an invaluable extra pair of hands at home and enabled my husband and I to have important conversations without distractions.

Thanks to Dawn and support from Rainbow Trust, the isolation felt by many families with a seriously ill child was removed and we were given precious time to focus on creating happy memories as a family. She not only kept us optimistic but provided much needed practical and emotional support to all of us.”
McKenzie’s mum Amberley

Your donations are making a wonderful difference to families just like McKenzie’s by funding vital Family Support Workers to care for families struggling to cope with their child’s illness. Thank you.

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Nicole, Jessica and family
Nicole, Jessica and family

Nicole and Jessica were diagnosed with Batten Disease within three months of one another. The sisters receive enzyme replacement therapy every fortnight but Jessica is too young to have it in England so the family must travel to a hospital in Hamburg, Germany, while Nicole, now five, goes to Great Ormond Street Hospital in London.  

The unimaginable strain of juggling these appointments with normal life, has been made easier for their family because of Rainbow Trust, which has provided some calm and routine to their intense schedule.

Rainbow Trust Family Support Workers Sabrina and Kate provide practical and emotional support to the whole family by taking the children out and giving parents Gail and Matthew some much needed respite. 

“We would be absolutely stuck without Rainbow Trust,” Gail says. “It’s having that regular support which we can plan things around. We want to enjoy every precious moment of all being together.”

Gail and Matthew’s determination and motivation, together with Rainbow Trust’s support, has helped them remain strong.

“Rainbow Trust knows how much we need and appreciate them. They are our only source of structured support and they enable us to do things together and they’ve got our back.”   

Rainbow Trust is a national charity which offers practical and emotional support for the whole family; from their child’s diagnosis, during treatment and, if needed, through bereavement. Your donations are currently helping over 2,300 families each year.

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Samuel and I getting ready for Christmas
Samuel and I getting ready for Christmas

Our gorgeous little boy, Samuel, has a life-threatening heart condition. He underwent his first open heart surgery at just four days old. His heart condition means he has to be watched all the time. Crying and coughing could trigger a cardiac arrest, so we need to keep him calm.

Our friends and family offer to look after our daughters Daisy and Betsy but no one’s comfortable taking on the responsibility of looking after Samuel. The only person who gives us a break from our desperate situation is Sarah, a Family Support Worker from Rainbow Trust.

We couldn’t do without Sarah’s support. She’s been supporting our family for two years. When she looks after Samuel, it gives us time with Daisy and Betsy. Samuel wakes in the night up to 25 times, so having Sarah there to look after Samuel during the day means we can catch up on some sleep after a difficult night.

She also cares for Betsy while Samuel has his hospital appointments. If we’re delayed, which often happens, she picks Daisy up from school. When Samuel had major surgery last summer, he was in hospital for a month. We didn’t have a car, so Sarah was our lifeline. She drove us to the hospital and would keep Samuel and Betsy occupied for hours while we spoke to doctors.

Samuel was still recovering from his heart surgery last Christmas and it was a struggle. Without Sarah, we don’t think we would have remembered everything we needed to make the day special for the children. She collected the Christmas tree, helped with the shopping and made pigs in blankets - Betsy’s favourite! She sat down with the Argos catalogue and helped the girls write out their Christmas lists too.

Without Sarah, we wouldn’t be able to manage. Please support Rainbow Trust to reach out to more families at Christmas and throughout the year.

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Cheeky Leo
Cheeky Leo

Becky is a mum supported by Nicky, a Rainbow Trust Family Support Worker who provides her with emotional support. Becky’s son Leo has extremely complex health difficulties. Due to a family breakdown, Becky doesn’t have any family and friends who can help her care for Leo, so Nicky is a vital life-line to Becky when she needs it. 

“I hadn’t slept for nearly 2 years, I would just doze in between Leo’s medical alarms. I have no one, it’s just me and Leo,” she explains. Eventually, Becky suffered a serious breakdown and was referred to Rainbow Trust Children’s Charity, which provides dedicated support to parents of seriously ill children.

When Becky was first introduced to Nicky it took her quite a while to trust her. “Basically I don’t trust anyone. I have chronic depression and severe anxiety, so letting new people in to my home is hard. It took me a year to trust Nicky, but she was lovely. She kept coming back and was so supportive. I also have dyslexia which Nicky has helped with. She’s learnt when I don’t understand things and helps explain in a way that I’ll understand.”

Nicky got to know Leo carefully so as not to disrupt the close bond Leo and Nicky had. And as Nicky’s relationship with Leo grew, it also did with Becky. “Nicky was just so patient with me. I was quite open and honest at the beginning. I told her I don’t trust anyone, I don’t socialise, I don’t want anyone. I’ll support Leo through anything and be there for him, but sometime I just have to go and have a cry. That’s when I ring Rainbow Trust’s on-call service and speak to Nicky. It takes a long time for someone like me to trust someone and I trust Nicky. I’ve never had that before in my life.”

“Without Nicky I think I just couldn’t do it. When I get really wound up and can’t cope with the stress and stuff that all the other services put on me I speak to Nicky and she just listens to me. She reassures me and puts things into perspective.

"he most important thing about Rainbow Trust is just to know there is someone there that you can trust; that are open and honest with you. They can help you and guide you.”

Your donations are making a wonderful difference to Becky by funding vital Family Support Workers to care for families struggling to cope with their child’s illness. Thank you. 

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Sarah and Emily
Sarah and Emily

My little girl Emily was diagnosed with leukaemia when she was eight years old. I was referred to Rainbow Trust, because I was alone, with little support. I was struggling to carry on with everyday things while worrying about Emily’s treatment. A Family Support Worker called Sarah came round to give us practical support, and Emily adored her straight away.

When Emily’s with Sarah, I don’t have to worry about her, all I hear is laughter. She’s so easy to talk to. I can ask her if Emily’s alright, as she opens up to Sarah and she can tell me if there is anything I need to know. I can also tell her if I am having a bad day. The hours she gives us means we have some normality again and Emily needs that. With Sarah, I feel like a load of bricks has been lifted off of my shoulders.

I remember that first day, I didn’t know what to do with myself. She told me to go shopping for two hours – I was standing in the middle of the supermarket with my trolley feeling guilty for leaving Emily at home.

But Sarah’s help gave me that breathing space that I hadn’t had since Emily was diagnosed. I didn’t think this kind of practical help would make a difference but it really does. She’s made life more bearable which I didn’t think was possible.

Sarah deals with children like Emily every day. She can help with advice and knows what to do in a crisis. I trust her with Emily, my precious child. Everyone in that situation should have a Family Support Worker. I can’t thank Rainbow Trust enough.

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Organization Information

Rainbow Trust Children's Charity

Location: Leatherhead, Surrey - United Kingdom
Website:
Facebook: Facebook Page
Twitter: @RainbowTrustCC
Project Leader:
Hanne Widmer
Leatherhead, Surrey United Kingdom
$28,972 raised of $40,000 goal
 
586 donations
$11,028 to go
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