Support Families Who Have a Terminally Ill Child

My job is most difficult when a child dies, or when a family are told there is no further treatment to help their child. It makes me sad seeing families break up due to the stress of the situation, but I know that the support I can give will help them to make the most of their last days, weeks or months together.

A few years ago I supported a 13 year old girl, Elizabeth, who was suffering from terminal cancer. She was the same age as my daughter, so it really hit home personally to see what Elizabeth was going through.

As Elizabeth got sicker, couldn’t attend school any more, and she quickly lost touch with a lot of her friends. The ones who did visit her at home or in hospital, she felt she had nothing in common with any more. She couldn’t join in with conversations about trips to the cinema or into town on a saturday with friends. She became very withdrawn and was really very lonely.

My support for Elizabeth enabled her to be a proper teenager and experience all the things she should be doing. We would go to the cinema, go clothes shopping and get our nails done together. When her friends came to visit, instead of sitting awkwardly she could now join in and show them what she had been buying in town, saying she went with her 'best friend'.

Towards the end of her life, Elizabeth opened up to me about the fears she had about dying, but was most worried about leaving her mother and how devastated she would be. She told me she would like to leave presents for all the members of her family to be remembered by, so during the last few weeks of her life we spent time shopping to collect special presents for each family member. She made a Build a-Bear for her mother with a personal, tape recorded message of her voice inside, and we spent time hand-painting pottery and making jewellery for her grandma and aunties.

After Elizabeth died, her mother told me that I had allowed Elizabeth to experience a real teenage life, although a very short one. It comforted her to know that Elizabeth had managed to life as normal a life as possible, almost to the very end, and that she hadn’t missed out on those seemingly simple experiences that most of us take for granted.

Elizabeth’s support was made possible by kind donations to Rainbow Trust, without which I couldn’t provide this wonderful support to children like Elizabeth. I am grateful to everyone that has enabled me to do such a difficult but rewarding job.