Supporting Terminally Ill Children

No parent expects to outlive their child, but for many of the families we support, this is a real possibility.

Four-year-old Jack Robinson passed away peacefully, a few months following diagnosis of an inoperable brain tumour. Given only a five per cent chance of survival, his heartbroken family were determined to make the most of their time with him. Supported by Rainbow Trust Children’s Charity, his parents, sisters and twin brother worked hard over his last few months to make his final wishes come true. 

“At that point, I had hit rock bottom and I needed someone to talk to. The thought that my child was going to die was too much. The hospice staff contacted Rainbow Trust on my behalf and a few hours later, Dawn, a Family Support Worker from Rainbow Trust, called and arranged her first visit.

“Dawn visited two or three times a week and, initially, came to play with Liam, Jack’s twin brother. I was worried about him as I had spent so much time away from him being in the hospital with Jack. Even now when I think about it, I feel so desperately guilty about leaving him but Jack needed me more. I couldn’t have left him in the hospital attached to tubes and machines all by himself. Dawn, became Liam’s first port of call. She took him out and spent time with him doing things that he enjoyed which gave me some much needed respite.

“Jack died on 1 April just after midnight. I called Dawn in the morning and she came over and spent the day with us.

“I spent a lot of time talking to Dawn about Jack’s funeral, about what I wanted to do for him. Dawn came to Jack’s funeral and has been with us ever since. Most charities leave after the child dies but Dawn never left – the hurt will never go away so having Dawn stay with us has been so special to us.

“I honestly don’t think we’d all be together as a family if she hadn’t been with us. She helped us stay together, she helped ease the tension that built up around us in our grief. Dawn was there for each and every one of us.

“I’m just so glad and grateful to have had someone here for all of us, thank you Dawn and thank you Rainbow Trust. I know they will be there for us if ever we need them."