Supporting Terminally Ill Children

My daughters, Ashleigh and Alisha, were diagnosed with Battens Disease in 2008 and their consultant introduced us to Rainbow Trust in January the following year. When we first met Family Support Workers Marlene and Kath, they told us they could do this and that - they were like little angels that floated into our lives.

Marlene would come with her suitcase of goodies –Ashleigh and Alisha loved it. Kath spent time with the girls playing with them and helping us to make memories together, while we had the time.

Lucy, my eldest daughter, is healthy, but found it difficult to cope with her sisters’ illness. She would just lock herself in the bedroom when things got difficult, but Marlene would help by fetching her from school if I needed her to. Rainbow Trust took her to the Sea Life Centre with a group of siblings who also had sick brothers and sisters, and she really enjoyed that. It was nice for her to be with other teenagers who had similar situations at home.

When Ashleigh and Alisha passed away, I relied on Marlene so much more. Losing my children meant I also lost so much confidence. Marlene took me to the hospice, to tribute days and to light a candle in church. Marlene’s support keeps me sane.

I can’t talk to other people about how I feel. They were my daughters and I grieve for them every day. As a single parent, having someone to talk to who has experience of children with similar conditions, has been so helpful. Being able to talk to Marlene about how I feel and for her to tell me it’s normal, has been so important for me. I need that.

Marlene has referred Lucy and I to places we would never have known about, which meant we could have a break. I lost my confidence and couldn’t drive so having Marlene to take us places has been so good for both of us. She’s been brilliant.

When a child dies, everyone leaves. Even the ambulance driver who used to take the girls to school became a friend but he left too. I see Marlene every three or four weeks which works really well for me. I can’t wait to see her and chat. I keep asking her, “At what point are you going to ditch me?” But Marlene will be here for me as long as I need her and that means so much to me.

Thank you for Marlene and for helping other families that need her too.