Our child did not 'lose cancer battle' - parents

Daisy's parents described her as a "smiley, bubbly girl" who "loved life"

The parents of a teenage girl who died from a rare disease have urged people to avoid using the phrase "losing the battle with cancer", after their daughter was seriously affected by hearing those words.

Alan Birikorang and Chiara Contillo's daughter Daisy was diagnosed with rhabdomyosarcoma - a type of soft tissue tumour - at the age of 12 and died just over a year later at her Hertfordshire home.

"Daisy didn't lose the battle. Daisy fought the battle," said Ms Contillo, who said that kind of terminology around cancer was "wrong".

The couple have set up a fundraiser in Daisy's name to raise money for advanced research into the rare disease.

"Who lost the battle? I think we lost the battle as a society, because Daisy's treatment was 30 years old," said Ms Contillo.

"There were no new drugs because there weren't enough funds for a rare childhood cancer, and that needs to change."

Daisy's family said "her inner strength on this journey is only comparable to superheroes and warriors you see in the movies"

Mr Birikorang described his daughter as a "bubbly, smiley" child who enjoyed the performing arts.

"She loved to sing and dance and create shows for us. She was just so lovely," he said.

Daisy's mum said she started signing her name "Daisy Joy" at school, even though she did not have a middle name.

"She loved life – every aspect. She was a very vibrant person," she said.

Then in August 2022, Daisy was diagnosed with cancer and began a series of intensive treatments.

She completed nine rounds of chemotherapy and 29 sessions of radiotherapy.

In March 2023, two new lumps were found and she had further chemotherapy, but was told that the treatments were no longer working.

'Detrimental effect'

Daisy's parents said in September 2023 their daughter was told she had "started to lose her battle with cancer".

"That one line had a detrimental effect on her mental health. She stopped fighting," they wrote on her charity fundraising website.

Ms Contillo said that terminology was "wrong".

"It's implying that in the battle with cancer, there's winners and losers… that language does not apply when you speak about cancer," she said.

Mr Birikorang said after hearing those words, "we saw a different side to Daisy".

"It was truly when she died after that," he said. "She didn't want to talk to anyone, she had her head down, and she wanted to come home.

"She said, 'If the treatment is not working, then I want to stop.' So she made the decision, and she was happy to be home.

"A powerful decision she made, taking control back in her own hands at such a young age."

If you are a carer of a child with a life-limiting condition, you can find a list of organisations that offer advice and support at BBC Action Line.

Daisy's parents have set up a charity in her name to try and find a cure for rhabdomyosarcoma

Daisy was cared for at home with support from Hertfordshire Community NHS Trust's children's community nursing service, before she died in November 2023.

Mr Birikorang said it was "devastating" to lose his daughter.

"It was a shock, because that's not how it's meant to go. We are meant to go before Daisy, that's just the nature of life.

"Having to talk about my daughter in eulogy and the past tense is very strange.

"It's a life sentence. Every day that goes by is a reminder of your huge loss, and of father and daughter time that I'll never get.

"The skiing we used do, that I was really fond of, I've never been back since and I don't think I ever will, such is the pain."

He said the pair had channelled their grief into positive action.

"We've decided to continue Daisy's legacy. We've set up a charity in her name, Daisy's Arc, to try and find a cure to change the story and narrative for someone else.

"We feel we are helping Daisy grow in some way."