Will you help open windows of support for seriously ill children, like Emily, and their families this Christmas?

Many families caring for a life-threatened child don’t know when their last month, week, day or even moment with their child will be.

This is the reality that families like Emily’s face right now. This is the reality that Rainbow Trust Family Support Workers, like me, have supported hundreds of families through.

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

For Emily’s parents, Ben and Laura, the constant strain of caring for Emily is emotionally overwhelming and physically draining.

I help the 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.

The biggest impact of my support I have noticed is on Laura. She often tells me how isolated and alone she felt, with no one who could understand. Due to Emily’s care needs Laura looks after her day and night and is unable to start or nurture friendships. By giving her the space to talk in her own time about her concerns and worries, without compromising Emily’s care, some of that isolation and worry has been eased.

This support has benefitted Emily’s father, Ben, too. When Emily was first diagnosed, Laura had to stop working altogether, but the family could not afford for Ben to do the same. That has been very hard on him, and he felt guilty for leaving Laura to cope alone. He now has peace of mind knowing Laura and their children are supported while he works.

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. Laura has told me that one of the hardest parts of caring for Emily is the constant worry she carries for her other children.

From her very early years Caitlin sometimes found it hard to leave Laura and to leave the house. I have spent time building a relationship with Caitlin, giving her confidence and trust in me, knowing that I am there to help her.

Caitlin’s anxiety carried over to school and has been affecting her education. I go in once a week to sit alongside her and help during lessons, encouraging her to learn through play, in a way that works for her.

Oliver was also having a difficult time at school. He often felt lonely and isolated, worrying about his friendships and about Emily’s illness and her future. He needed a way to express his feelings, so I trained in drawing and talking therapy. By delivering weekly sessions in school, I have watched his confidence grow, and his friendships strengthen. This really helped Oliver with his emotions, behaviour and attainment.

There are so many other seriously ill children and their families 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.

However, we receive no central Government funding and rely entirely on the kindness of supporters like you to help us provide this support.

Please donate today to open windows of support for seriously ill children and their families, so they can have the support they need this Christmas.