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

Our latest report, #PandemicPressures, outlines the change in the role of our Family Support Workers throughout the COVID-19 pandemic to ensure families caring for a life-threatened or seriously ill child still get the support they need.

Family Support Worker, Charlotte, was using child-led play but when the lockdown began, it was suddenly necessary to switch these sessions to video calls. Charlotte provided 13 families with this support, virtually playing each week with children between the ages of three and 14.

She said: "Whilst enjoying playing together with a sibling of a little girl who is recovering from cancer, she unexpectedly said to me, 'Charlotte, I would really like to talk to you about my feelings'. Each child is different but most of them jump straight into the world of play, and I will end up going wherever that takes us.

"I've been on a virtual pony trek (fashioning a pony from a stool), pretended to be a Teenage Mutant Ninja Turtle, had a teddy bear's picnic and even hosted a birthday party for the Gruffalo."

Charlotte is continuing to provide a mix of face-to-face support and virtual play depending on the family's circumstances.

Rachel's son, Frank, 12, has Batten Disease and is completely reliant on others for his care as he cannot move himself or communicate. He is especially vulnerable to chest infections which means COVID-19 is a grave threat to his health.

In case Rachel or her husband became ill, she ran through Frank's medication with her older children who were 16 and 19 at the time.

She said: "They were prepared to do everything they could, and they had to have a crash course in how to do things... I'm sure that was quite daunting for them."

Looking ahead, Rachel continues to feel anxious and will remain vigilant. "The virus has not gone away. Frank is still very vulnerable."

Rainbow Trust Children’s Charity has quickly innovated and adapted its service, in line with local guidance, to make sure that as many families as possible receive the tailored support that they need, whether virtually or face to face.

Your donations make this work possible for families with a seriously ill child so we are very grateful for each and every donation we receive.

Thank you for your support. We can't do this work without you.

Family Support Worker, Charlotte
Family Support Worker, Charlotte
Frank, who is supported by Rainbow Trust
Frank, who is supported by Rainbow Trust

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Asher (centre) with his sisters
Asher (centre) with his sisters

I hope you are safe and well.

During the Covid-19 pandemic some of the families we support have needed our Family Support Workers to source medical and food supplies and drop them to their doors. Our Family Support Workers have also been providing transport to dialysis sessions, taking breast milk from new mothers unable to see their premature babies in the neonatal units because they had coronavirus symptoms, helping arrange children’s funerals and providing bereavement support to the devastated parents and siblings. Your support has enabled us to be on the frontline of the coronavirus pandemic.

Tara is mum to two-year-old Asher, who has life limiting conditions, and to two daughters, aged three and seven.

The pandemic has been especially tough for them. Not only because of lockdown and self-isolation but they also had to re-schedule vital hospital appointments and Asher hasn’t had necessary tests because they are shielding as a family to protect him. 

Our Family Support Worker, Carly, has been a lifeline providing practical and emotional support to the family with video calls, playing games with the children online and also giving emotional support. This support has helped them feel less scared and less anxious. Carly's support has helped them face the fear of the unknown, the anguish of the new normal, the isolation and despair that this crisis has exacerbated.

Tara tells us that it has been very challenging: all the lifelines they had before the pandemic were taken away so to have Carly supporting them and giving their family that continuity has been crucial during this incredibly difficult time.

Since the coronavirus crisis started our Family Support Workers have been working on the front line, supporting vulnerable families, like Tara’s.

We would like to thank you for your wonderful support. We can't do this wonderful work without you.

Thank you.

Asher with Family Support Worker, Carly
Asher with Family Support Worker, Carly
Asher having fun in the sun
Asher having fun in the sun
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Family Support Worker Angie
Family Support Worker Angie

Monday: I visited a mum whose seven-month-old baby had died. She is struggling most days as her husband works; she’s alone at home and cries because she misses her baby so much. We talked about the day Mia died and her funeral.

Mum asked me to call the Department of Work and Pensions about a payment she’s received. They confirmed that the carers allowance continues for eight weeks after a child has died. Mum was so grateful as they’ve been struggling financially after her self-employed husband wasn’t paid for the days he took off following their baby’s death.

Tuesday: I took David, 12, and his mum to a hospital appointment. David has a brain tumour. He has suffered brain damage due to radiotherapy he’s had over the last six years and Mum finds it too difficult to take him alone on the train. David had an MRI scan which showed that his tumour is currently stable. It was a long day and both Mum and David slept while I drove them home.

Wednesday: In the morning I had counselling. All Family Support Workers have monthly sessions to ensure our wellbeing in such a stressful job. We talked about baby Mia’s funeral.

Afterwards I visited one-year-old Ash and his mum. Ash suffered severe complications at birth and his respiratory system is irreversibly damaged - he’s being supported by the palliative care team. His life expectancy is thought to be about 18 months old. As this gets closer, Mum is getting very anxious and I am supporting her by listening and helping her to think about what she’d like to happen when she has to say goodbye to Ash.

Thursday: This morning I took Amelia and Anthony, Emily’s siblings, to school. Emily is two and has a heart condition. She is often in hospital and Mum spends most of her time caring for Emily and worries that her other children feel left out. Sometimes I look after Emily so that Mum can spend time with them.

After I dropped them at school, I drove to Dami’s home. Dami is four and has Stage 4 Neuroblastoma. Dami has four brothers and sisters including a new baby. Dad is working whilst Mum is at home caring for Dami, her youngest daughter and the new baby – she’s very tired. When I arrived, I washed up, did some dusting and prepared some vegetables for dinner. I made Mum some tea and looked after the children so she could have a shower.

In the afternoon I picked Amelia and Anthony up from school and we went to the park for an hour so they do things that children do, away from the worry of their sister being very ill.

Friday: Our whole team meets to discuss our week including our successes and also things we’ve found difficult.

After the meeting, I put my week’s notes onto our database, texted all my families to see how they were and to arrange my appointments for next week.

“Being a Family Support Worker is an amazing job. It’s a highly skilled role and experience with children and families, dealing with illness and uncertainty are the most important qualifications. The hardest part is when we are unable to help a family because we are already at full capacity. We need so many more Family Support Workers to fulfil the needs of all the families out there who are having the life changing experience of having a seriously or critically ill child.”

You can help to make every precious moment count for families with a seriously or terminally ill child by sponsoring a Family Support Worker like me today.

Special time with a special little one
Special time with a special little one

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Jenson in Family Support Worker's arms
Jenson in Family Support Worker's arms

Thank you so much for supporting children with serious illnesses by funding our projects to give quality time to children and their families at a difficult time in their lives.

You may remember reading about Dawn. She is one of our Family Support Workers supporting Clare and Steve, whose son Jenson has Down’s syndrome, heart and lung problems and needs oxygen 24/7. He also has feeding difficulties so needs a specialist feeding tube and in the run up to Christmas was diagnosed with pneumonia and admitted to hospital.

Dawn helps Clare and Steve’s beautiful family in different ways.

She will get to their home at 7am to help the children get ready and take them to school while Clare and Jenson are in hospital.

Or she may drive Clare and Jenson to hospital so Clare can look after him during the journey.

Dawn will support Jenson’s brother and four sisters emotionally through play, crafts and even making biscuits. This encourages the children to open up, talk about their concerns and share their worries, giving them tools to better cope with the difficult situation their family is going through.

She listens to Clare and her husband, Steve, and supports them emotionally, giving them time to deal with their situation.

She may help them fill in forms and point them in the right direction of help the family may be entitled to.

She often helps with one-to-one sessions with one of Jenson’s sister, who is on the autistic spectrum. Or she may look after some of the other siblings, making them feel valued and helping with their self-esteem.

When the family needs her, Rainbow Trust Family Support Worker Dawn is there for them.

This is only possible thanks to the donations of friends and supporters like you. We are very grateful for your generosity and support to help life-threatened or seriously ill children and their families.

Please spread some Christmas joy this festive season and donate to Rainbow Trust’s project to help raise funds to reach the 23 families on our waiting lists who are caring for a life-threatened or seriously ill child.

Wishing you a wonderful and peaceful Christmas.

Thank you.

Jenson in Family Support Worker's arms
Jenson in Family Support Worker's arms

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When doctors found a tumour in her son’s liver, Marte found it difficult to cope. This is her story.

"When Fabian, my son, was two and a half, he was seriously unwell but specialists and doctors told me he was completely fine. I knew he wasn’t.

When he stopped eating and was in serious pain I took him to our local hospital, where they couldn’t identify what was wrong with him and we were referred to Brighton Hospital. Within half an hour being there we were told he had a big tumour on his liver. I didn’t know what to do or how I would cope.

He started his chemotherapy at The Royal Marsden Hospital soon after. As the tumour was very big, doctors wanted to shrink it as much as they could before operating. When they did operate they had to remove part of his liver as well and chemotherapy continued for two months to try and ensure all of the tumour had gone. Unfortunately, Fabian’s hearing was damaged by the treatment and he now has hearing aids in both ears as a result.

My husband had to take days off work to come to hospital but he couldn’t do this every time so a friend referred me to Rainbow Trust and our Family Support Worker, Jayne, started working with us very soon after that.

Jayne helps and supports us in many different ways. We couldn’t travel by train due to the high risk of infection for Fabian so she helps by driving us to and from hospital. This is of huge help not only to avoid infection but because it means one less thing to worry and stress about: there are always problems parking at the hospital so having Jayne there means I am not late or stressed when we arrive for treatment or to see consultants.

The time in the car is good for me too: while Jayne drives we talk about my worries and concerns, about how this is affecting me - she gives me emotional support, which I really need.

By the time Fabian had finished his chemotherapy, I had given birth to my daughter, Hania, so going to hospital with Fabian became even more stressful. Jayne would help by looking after Hania while Fabian had scans and x-rays. Doctors tell me there and then what is going on so I have to concentrate and listen carefully. Knowing that Hania is safe with Jayne means I don’t have to worry about her and I can have all my attention and focus on what the doctors are saying.

All of our extended family is in Poland, so we don’t have much support around us. Jayne has been amazing, a constant presence with practical solutions and really helpful. She would always think about how she could help us and would offer advice if we need it. I was really lucky to find Rainbow Trust as I didn’t think there would be anyone to help families such as mine. We were on the edge. Everything was too much to cope with.

It’s always so good to open the door to Jayne and her smiley face. She is literally the right person, in the right place ,at the right time – she has helped us so much.

Jayne is doing a very difficult job, helping parents and seriously ill children; she is amazing and I am really grateful for all the incredible support she has given me over the past three years."

Your donations and support enable families who have a child with a life-threatening illness to make the most of time together, helping us provide expert, practical and emotional support, where they need it, for as long as it is needed.

Thank you.

Fabian with Family Support Worker Jayne
Fabian with Family Support Worker Jayne
Family Support Worker Jayne with Fabian's sister
Family Support Worker Jayne with Fabian's sister
Playing hide and seek with Fabian
Playing hide and seek with Fabian
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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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