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The little girl driving change: how Aoife’s legacy will help other children

01
Sep
2020

After Aoife Flanagan died of germ cell cancer at the age of three, her mum, Eilish, set up a charity in her daughter’s name to change the future for other children with cancer.

Posted on 01 September, 2020 by Clara May
Aoife and she Shetland pony, Bubbles

    Image: Aoife and her Shetland pony, Bubbles. Credit: Eilish Flanagan

In June 2019, Eilish Flanagan took her daughter, Aoife, to the doctor after the three-year-old started to experience pain in her stomach. She was told the pain was caused by common constipation and it should go away on its own.

Over the next three weeks, Aoife went to the doctor a further 11 times. She was eventually referred to Great Ormond Street Hospital and was diagnosed with germ cell cancer – a rare childhood tumour that usually develops in the ovaries or testes. Just five days later, Aoife passed away.

There was no question for Eilish that she wanted to use what happened to Aoife as a positive driving force for change, and so she set up Aoife’s Bubbles – named after Aoife’s beloved Shetland pony, Bubbles – which will be the UK's only registered childhood germ cell cancer charity.

As well as raising awareness of germ cell cancer, the charity also wants to improve the outlook for every child with cancer.

'I won’t let her light fade'

Aoife’s Bubbles has now partnered with us to support the vital work Professor Louis Chesler and his team are carrying out on the ITCC-eSMART trial.

The trial, which is led in the UK by Dr Lynley Marshall at The Royal Marsden NHS Foundation Trust, is designed to deliver the best possible treatment pathways for children with aggressive solid tumour types, including germ cell tumours.

Eilish said: “Aoife was the kindest little person you could ever wish to meet, and she had such strength and determination that I’m sure her mission was to help others.

“I set up Aoife’s Bubbles as I’m determined that through this utter heartache, something positive will come. Aoife’s presence in this life is one of hope, and I just won't let her light fade.”

Giving families the chance to make memories

The trial will build on the incredible insight gained from genomic testing, which identifies which cancer-causing genes and mutations are present in a tumour, in order to assess how effectively the personalised treatments selected for each child are working. The use of detailed testing and targeted treatment plans will ensure that children enrolled are more likely to respond positively, as well as sparing them from any unnecessary side effects.

Aoife

Image: Aoife playing outside. Credit: Eilish Flanagan

Professor Chesler is leader of our Paediatric Solid Tumour Biology and Therapeutics team. Together, in Sutton, with the Centre for Molecular Pathology at The Royal Marsden, the team have developed real-time tests for detecting genomic changes and assessing treatment response from patient blood samples.

The money raised by Aoife’s Bubbles will be contributing towards the laboratory equipment and substances needed to carry out these vital tests. Their generous support will allow the team to be flexible in their approach and will enable them to react quickly to any developments in treatment response.

Eilish said: “I’d always wanted to fund research. I just thought time is going past and children are still getting sick – it’s time to do something. There will be more children that need help, and we want to be able to give families the chance to make as many memories as possible.”

Professor Chesler said: “We want to improve the outlook for every child diagnosed with cancer. This trial will help us match children with the latest targeted drugs, and bring genomic testing into clinical practice for children. We’re delighted that Aoife’s Bubbles have chosen to support this potentially life-changing work. Together, we can help children with cancer get the best possible treatments, as swiftly as possible.”

We are an internationally leading research centre in the study of childhood cancers and cancers in children, teenagers and young adults.

Find out more

Aoife’s legacy

Since first setting up Aoife’s Bubbles, Eilish has devoted herself to the work of the charity and organised a number of fundraising events, including a 17-hour golf marathon and a wing walk, which is due to take place during Childhood Cancer Awareness Month.

Aoife’s Bubbles has already pledged £15,000 per year towards our research, and aims to increase this support in time as the charity goes from strength to strength.

“Having Aoife’s Bubbles has really helped me,” said Eilish. “Aoife was my only child, so I suddenly went from full-time mummy, doing everything and anything for her, to returning home from a 'quick trip to the doctor' with no Aoife. I channel all my grief into Aoife's Bubbles, and I take comfort knowing the world won’t forget Aoife.

“After Aoife passed away, I spent a lot of time with her while we were waiting for her celebration of life, and I made her a promise that I wouldn’t stop until she was saving lives. Any child facing cancer deserves a chance in life – they deserve the quickest diagnosis, the best treatment options and the best possible outcome.

“Not many people can say they’ve made a huge impact and saved lives, but Aoife will always be known for doing exactly that – and I take complete pride in the fact that this is the legacy Aoife has left and is actually still creating.”

How you can support our research

Find out more about Aoife’s Bubbles.

If you would like to get involved and support our childhood cancer research, please contact Nicola Shaw in the Development Office: 020 8722 4227 or [email protected]

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fundraising childhood cancer childhood cancer awareness month
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