Terminally ill children in isolation need you

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