Supporting Terminally Ill Children

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. 

Links:

• Find out more about Rainbow Trust
• Sponsor a Family Support Worker like Michelle today

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.

Links:

• Find out more about Rainbow Trust
• Sponsor a Family Support Worker like Abi today