Support Families Who Have a Terminally Ill Child

Unable to work, no income, living in temporary accommodation with a seriously ill child and no support network. What a difficult and lonely place to be.

Rainbow Trust Family Support Workers continue helping families experiencing isolation and loneliness so they don’t have to cope alone

Wahyuni is mum to Antonio, who is nearly two years old and was born with Down’s syndrome. Because of his Down’s syndrome diagnosis Antonio was at a higher risk of having leukaemia so he had regular blood tests. Unfortunately, in September 2022, something unusual was found in his blood and Antonio was diagnosed with Acute Myeloid Leukaemia (AML), a type of blood cancer.

Wahyuni is a single parent with no family, friends nor social network in England.

Living at the hospital for six weeks. Wahyuni has described how lonely she felt without having anyone to talk to until Rainbow Trust stepped in.

“There was very little human interaction. I was looking after Antonio changing nappies, feeding him, watching him have his chemotherapy, cuddling him when he felt unwell and playing with him to entertain him.

“I didn’t really talk to anyone because it was just Antonio and me in the room. The nurses came in to give him the chemotherapy and chatted for a few minutes now and then. That’s how terrible it was. I couldn’t talk to Antonio, he was too little and wouldn’t understand. I felt very sad during the hospital stay but put on a brave face.”

Family Support Worker Tanya started supporting them, helping alleviate the isolation and loneliness that gripped Wahyuni during this daunting time. It helped her regain a sense of normality amongst the sterile and lonely medical setting in which she was living.

Tanya visited them regularly in hospital and spent time with them, talking, giving Wahyuni a break to grab a cup of tea, to take a short walk, or a period of much-needed respite.

“We talked about different things, not just about Antonio. Sometimes, when you are dealing with illness you don’t want to talk about it all of the time because it is so sad”, Wahyuni said.

Tanya helped take Wahyuni’s mind off Antonio’s illness and provided a break and a distraction from her daily reality.

This proved critical to Wahyuni’s and Antonio’s emotional wellbeing.

“He is doing really well after chemotherapy. The side effects were quite scary for me. But it is only me, so working is impossible as Antonio is not in nursery yet”, Wahyuni said.

Rainbow Trust Family Support Workers help is tailored to the needs of each family living with childhood illness.

It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for your wonderful support.

Links:

• Sponsor a Family Support Worker like Tanya
• Read our latest magazine