Physical Health United Kingdom Project #46080

Terminally ill children in isolation need you

by Rainbow Trust Children's Charity

Terminally ill children in isolation need you

Project Report | Nov 11, 2025
With an uncertain future ahead, your support helps

By Remila | Mum to Emily and Bjorn

Family Support Worker Abi and Emily

When Emily had her first seizure at six months old, our lives changed forever.

We were told she had a very rare neurological condition called de-novo-heterozygote variant gene SCN8A. There is no cure.

Hearing that broke us. We were very scared. We didn’t know what to expect for our daughter, for her future.

Now Emily is eight. She still has seizures every week, she is non-verbal, and she uses a wheelchair and a walking frame. My husband Bujar and I have to be with her all the time, day and night. It has been a very hard few years.

In September 2023, Family Support Worker Abi began supporting.

Abi helps us get to appointments at GOSH and Addenbrooke’s Hospital in Cambridge. I have only just passed my driving test, and I am scared to drive alone with Emily because of her seizures.

It is just too much pressure and I feel very anxious. Abi picks us up and drives us, which takes away that stress of driving with Emily alone, traffic jams and finding parking. We would have really struggled without this support.

Before Abi, my husband Bujar had to take time off work to drive us to hospital, and he would lose a day's wages. We were really struggling financially because it is only him working, providing for the family. Abi’s support has helped ease that burden and has given Bujar peace of mind.

Abi also stays with us in hospital. She plays with Emily so I have the time and energy to focus on the appointment and to talk to the doctors. She looks after Emily if I need a comfort break or to grab a coffee. This might sound small, but on those days it means everything. It means I can take better care of myself and of Emily. Abi is very kind and caring with Emily and with me.

Abi has helped with so many things, like applying for sensory toys and a special car seat for Emily. I didn’t have the time or energy to do those things on my own.

Emily’s condition is a lot to manage and some days it feels like I just can’t cope. When it gets too much, having Abi to talk to makes a big difference. It has helped me to feel less alone. Abi also spends time playing with both Emily and Bjorn, who is now three. They have such a special bond with her. She makes them laugh and smile and they have fun. And for a little while, I can breathe, I can catch up on things or just have time to myself.

We don’t know what the future holds for Emily. That is scary. But I do know that without Abi, Rainbow Trust, and support from supporters like you, we would still be like we were three years ago, struggling. Thank you.

One of my favourite photos of Emily

A lovely day out for the family

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Jul 24, 2025
A career in the life of Family Support Worker Abi

By Ellen Armour | Project Leader

Family Support Worker Abi and Moses in the car

Abi first joined Rainbow Trust as a volunteer. Nearly a decade later, she is a Deputy Family Support Manager and tells us about her time at Rainbow Trust.

After gaining my qualification in childhood studies I worked with children and families as a private nanny. I also have a passion for travel and spent years both travelling and working in several countries.

Eventually I wanted to have a new challenge but continue to work with children and families and Rainbow Trust sounded like the perfect place for me.

In 2015, I began volunteering as a Family Support Volunteer for one day a week and I haven’t looked back since. As a volunteer, I supported three families and each session was unique, whether it was supporting a child going through cancer treatment, spending time with brothers and sisters who are sometimes overlooked, or helping to minimise stress by driving families to hospital appointments.

After a year as a volunteer, I realised how rewarding this work was and applied to become a Family Support Worker.

My favourite thing about being a Family Support Worker, and the thing that truly highlights how essential Rainbow Trust’s support is for seriously ill children and their families, is the time we can give. We can dedicate time to families, meaning we can properly support them with whatever they need, whenever they need it. It is so impactful.

“I don’t know how I would have coped on this often tumultuous journey without Family Support Worker Abi.” - A parent supported by Abi

Seeing the excited face of a sibling when I come through the door and they know that they are going to have some time where the focus is on them. Watching a seriously ill child smile because they are going to get to be like any other child and play. Hearing a parent tell me how much my support has helped. These moments are all so special.

Each day is different, depending on what a family needs at that moment. Recently, for example, I provided school transport for a sibling as his mum cannot leave his seriously ill sibling at home. On the way we had a chat about how he was doing and how school was. This transport to and from school alleviates some stress on his mum and gives him some one-to-one time with me. After dropping him off, I collected a food shop for a family unable to leave their house and spent time chatting with the mum while unloading groceries and helping with some ironing.

This alleviates some stress on the parents as the family do not have the time to do these simple things. I then had some phone calls with families to arrange visits and check in on them before I finished the day by picking up the sibling from school.

Even one day of support can make a huge difference to a family who is struggling.

Now, after nearly a decade with Rainbow Trust, I have progressed to Deputy Family Support Manager. I am excited for what the role will bring, particularly spreading awareness of what Rainbow Trust so we can reach more seriously ill children and their families who need support.

It is only thanks to your donations that Family Support Workers like Abi can give life-threatened children and their families this support. Thank you for your kindness.

Abi and Angelica, who is seriously ill

Abi taking Emily out

Oliver and Abi during a support session

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Apr 1, 2025
Your support helps families during uncertain times

By Sonia | Mum to Mohammed and Amal

Mohammed enjoying a supermarket visit with Georgia

My son Mohammed is five years old and was born with a rare genetic condition which affects his liver, intestines and immune system.

In the future he will need a liver transplant.

Mohammed also has a severe autism diagnosis, is non-verbal and has no sense of danger. We have to monitor him 24/7 to ensure that he does not pull out his Hickman line and stays safe.

Life is very difficult. I do struggle sometimes.

Family Support Worker Georgia started supporting us in 2023. Her support has been essential for the whole family, helping us to navigate the challenges of caring for Mohammed. She has helped me with paperwork when applying for benefits and Mohammed’s disability badge, helps with shopping, school pick up and running errands; she supports me by monitoring Mohammed and she helps me to understand medical jargon. This practical support alleviates some of my feelings of being overwhelmed while allowing me to have some respite and to focus on spending time with my family.

When Mohammed catches an infection, it often means an urgent trip to hospital, sometimes for an extended period of time. These are usually unexpected and Georgia supports us by going to our house to collect the essential things we need and brings them to the hospital. It is one less thing to think about, and it helps so much.

Georgia will also sit with me in hospital, either to chat about how I am coping or to give us a break by spending time with Mohammed. Knowing someone is there to support us, listen to our worries and ease some of my stress is such a relief.

If we have to rush to the hospital with Mohammed, it is also a relief to know that Georgia will pick Amal, our seven-year-old daughter, up from school and talk to her about how she is feeling. Amal struggles when Mohammed is in hospital as me and her dad are not around as much but having Georgia’s support has really helped give Amal the one-to-one time she needs.

Amal also attends some of the Rainbow Trust sibling days, allowing her to connect with other children going through similar experiences and to create a support network outside the home.

The time Georgia spends with Amal and Mohammed is very important to me as I can have some respite, time to myself and the chance to do jobs around the house that I cannot get done while monitoring Mohammed.

Because of Mohammed’s complex medical needs and the likelihood of him needing a liver transplant, our future remains uncertain. However, I know that whenever I need support or feel overwhelmed, I can rely on Georgia.

Thanks to donations from supporters like you, my family was able to receive this support we desperately needed to cope. Thank you.

Family Support Worker Georgia with Mohammed

Amal at the farm at a Rainbow Trust sibling day

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