Physical Health United Kingdom Project #6588

Support Families Who Have a Terminally Ill Child

by Rainbow Trust Children's Charity

Support Families Who Have a Terminally Ill Child

Project Report | Oct 23, 2026
At five years old Lara needed a heart transplant

By Hanne Widmer | Project Leader

Family Support Worker Jen with Lara in hospital

Lara’s family had to leave Syria because of the war. It was no longer safe. They moved to Lebanon, where Lara was born, a beautiful, cheerful and vibrant child. But Lebanon was unsafe too so in 2021 the family came to the UK hoping for a better life, especially for Lara.

At the beginning of 2023, Lara caught a virus. She stopped eating, lost weight and changed completely. She no longer wanted to play, only to sleep, and she made strange noises and preferred fluids to solid food. Her parents took her to the doctor several times and were told it was just a virus, but they were not comfortable with that. They began filming Lara every day.

In June 2023, as the family prepared for Lara’s fifth birthday, she became ill again. Her parents showed the doctor everything they had filmed. The doctor fell silent and said Lara would have to go to hospital. A chest x-ray showed something was wrong, and the news changed the family’s lives. Lara had a problem on the left side of her heart, and it was working at only 10%. She would need a heart transplant.

Lara’s heart was completely exhausted and she could no longer go to school. She spent 15 days in intensive care, and the family was told she would not be coming home. Although they live in Scotland, they had to travel to the Freeman Hospital in Newcastle for Lara to be assessed for a transplant. She was so ill that her parents feared she might have a heart attack on the journey. Doctors put her on a Berlin Heart, but finding a suitable donor heart would be very difficult. Her parents were devastated and exhausted. The Berlin Heart carried risks of its own, including bleeding and strokes that could end her life.

Then the family met Jen, their Family Support Worker from Rainbow Trust. She stayed with them throughout Lara’s sixteen months at the Freeman Hospital and helped with everything. Every week she supported the family, stayed with Lara in hospital and played with her. They did lots of arts and crafts and played games together. Lara looked forward to Jen’s visits and was happy in her company. It also gave Lara’s parents time to take a break or buy essentials.

Lara’s little brother, Jude, has spent half his life living in hospital accommodation, yet he is a healthy child. Jen supported him too, spending time with him and taking him out when his parents were busy juggling everything. He loves running around the park, playing and being outdoors.

In Spring 2026, Lara received the gift of life: a new heart. After all the waiting and fear, her family was overjoyed, and hope returned to their lives.

Lara’s recovery was difficult and tiring, and she had many complications, but their stay in Newcastle ended and Jen continued supporting the family after they returned home.

Lara crafting in hospital

Family Support Worker Jen with Jude

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Jul 8, 2026
You help families like mine feel less isolated

By Katie | Mum to Maya and Ezri

Maya in hospital

When my babies, Ezri and Maya, were born, Maya was taken straight from me, I didn’t get to hold or see her.

She had her first open heart surgery when she was only 10 days old.

A time that should have been filled with excitement and new baby joy was replaced with regular hospital appointments and knowing that the only thing keeping my child alive was a fragile piece of gauze in her heart.

Having to balance healthy twins is a challenge on its own but with Maya so sick I felt lost and I only survived on adrenaline.

In October 2019, Family Support Worker Wendy started supporting us. The support is invaluable. No judgement, no pressure.

When Covid began we had to shield and isolate. Wendy was an anchor to me and was around throughout the pandemic dropping off craft boxes, weekly shopping, and medications from the pharmacy.

Maya had to have an essential operation and I could not find childcare for Ezri. If Wendy had not been able to look after Ezri for a few hours, Maya’s operation would have had to be cancelled.

In 2022, Maya went into hospital for her fourth open heart surgery. We were there for 59 days.

During that time Wendy gave me the opportunity to take some time out for myself, helped with the school run for Ezri and gave Maya the chance to have some fun. Wendy supported Ezri with her emotional needs, helping her to understand why her sister was not at home.

Wendy has supported with additional hospital visits, transport for regular blood tests and taking Ezri out to entertain her whilst we attend appointments.

Without Wendy’s support, I would feel isolated and Maya and Ezri would not have had the opportunities, attention and experiences they deserved. Wendy makes us smile, which is something very precious.

Thanks to donations from supporters like you, we have been able to receive a lifeline that we as a family have all needed.Thank you.

A craft and play box dropped off by Wendy

Maya and Ezri enjoying heart crafts

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Mar 10, 2026
Families facing heartbreak alone need your support

By Michelle | Family Support Worker

Emily at home

As a Rainbow Trust Family Support Worker, every day I support parents living through the heartbreak of watching their life-threatened child suffer. They don’t know when their last month, week, day or even moment with their child will be.

This is the reality that many families, like Emily’s, are facing right now.

Emily is 14 and has a neurological disorder and curvature of the spine which is so severe that her family has been told she could stop breathing at any time. She lives every day in constant pain.

I help Emily's family in whatever way I can, trying to do what is of most value and assistance to them so they can manage everything they are juggling.

For Emily’s parents, Ben and Laura, seeing Emily in such pain and suffering every day is really hard. And it is even harder to deal with the reality that she may struggle to keep going.

The constant strain of caring for Emily is both emotionally and physically draining.

Laura often tells me how isolated and alone she felt. I give her the time and space to talk about her concerns and worries, without compromising Emily’s care, some of that isolation and worry has been eased. And when the uncertainty of Emily’s future gets too much, Laura knows I am just at the other end of the phone and she does not have to face it alone.

Emily’s needs have made it very difficult for Laura and Ben to keep the lives of their other children, Oliver, 10, and Caitlin, five, as normal as possible. For Laura, one of the hardest parts of caring for Emily is the constant worry she carries for her other children.

Caitlin becomes very anxious when left with anyone else. Oliver has been having a difficult time at school, worrying about his friendships and Emily’s future. I support them both in school, building their confidence, ensuring they do not fall behind and are given the same educational support as other children their age.

There are so many more families, like Emily’s, who need help. Right now, I am supporting 20 families, each of whom live through similar exhaustion, worry and heartbreak that Emily's family experiences every day.

We receive no central government funding and rely entirely on the kindness of supporters like you.

Helping seriously ill children and their families through the most difficult time in their lives, supporting their future and putting a smile on the faces of children who are going through so much is worth everything.

Thanks to donations from supporters like you, seriously ill children, like Emily, and their families can receive the lifeline of support they desperately need. Thank you.

Family Support Worker Michelle with Emily

Michelle, Oliver, Caitlin and Laura

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