Support Families Who Have a Terminally Ill Child

Leanne, a Family Support Worker from Rainbow Trust’s North East team supports Darren and his family:

“Grace was 18 months old when she was diagnosed with a brain tumour. She’d been fine up until then. She was one of those children who went straight from crawling to running so when she started falling over, we thought she was just clumsy. She became less mobile and then she started having tantrums so we took her to a paediatrician but he couldn’t find anything wrong. It wasn’t until she was sick at nursery that she was rushed to A&E where they did a brain scan and we were told that Grace had a brain tumour. I was devastated.

“It all happened so quickly – she was diagnosed on the Tuesday and on Wednesday had brain surgery to remove the tumour. Watching her go through the treatment was really hard, the worst possible thing is you know it’s this terrible poison going into her body and it drained her. She was so tired.

“She needed ongoing treatment, and it wasn’t till further down the line that we started to struggle. I would stay at the hospital from 9am to 7pm then go home. My wife Fiona would then stay overnight so Grace wouldn’t be alone. Every morning we were exhausted.

“The hospital had a Rainbow Trust drop in group where we heard about how they supported families in our situation. Leanne now takes Grace out for a couple of hours to the park or soft play when she isn’t receiving treatment. It gives her some fun time and it gives Fiona and I a break to do housework, go shopping or even just sleep. It’s such a help, I honestly don’t know where we’d be without Leanne.

“I would definitely recommend Rainbow Trust and I have already. I’ve told people how fantastic and brilliant our Family Support Worker, Leanne is. We’d be lost without her. Talking to her is such a helpful release for us, she listens and the best thing is, she cares. She treats Grace like her own. I told someone on the ward the other day that the positive out of Grace’s cancer is Leanne and Rainbow Trust.”

Last year Rainbow Trust supported over 2,000 families like Darren’s, but there are still thousands of families that we could help with extra funding. Thank you for helping us to reach those new families.