Antonio's Story

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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 or social network in England.

Initially Wahyuni was on compassionate leave to care for Antonio, but it became impossible for her to work so she had to give up her job to be by Antonio’s side, 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. I didn’t want to show that to my son, I wanted to shield him, so I tried to keep myself happy all the time.”

Wahyuni was referred to Rainbow Trust by a Young Lives vs Cancer Social Worker at John Radcliffe Hospital and 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 well-being. Antonio was discharged from hospital in March and both he and his mum are back living in accommodation at her previous employers. They live in the country, where there is no public transport, and Wahyuni doesn’t drive so Tanya drove them to some of Antonio’s hospital check-ups, which was of great help and made them feel less cut off.

“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. Wahyuni and Antonio are on the housing list waiting for permanent accommodation. Antonio still gets very tired and they just take things slowly. He is a cheeky, happy little boy who enjoys singing and cuddles.

Rainbow Trust Family Support Workers help is tailored to the needs of each family living with childhood illness. Having a seriously ill child is tough on parents; everyday tasks may feel relentless; work may have to stop to look after the seriously ill child; and they may feel isolated and lonely. The whole experience could become emotionally and physically draining. Rainbow Trust Family Support Workers help by tailoring the support to each family member, giving them time to focus on what matters the most to them.

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Continued support for a family for as long as they need us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

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