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08
Jun
2020

Isabella’s gift: The precious donation aiding vital research into childhood brain cancer

The parents of Isabella Ortiz, who died from a brain tumour, have highlighted the need for rare tissue donation, to help other children facing the same condition.

Watch Isabella's parents explain why they support our research into childhood brain cancer.

Isabella Ortiz was always smiling. She loved being around people and she loved Disney films. Despite being diagnosed with a rare brain cancer at the age of three, she always managed to find the fun in life – even asking to watch The Lion King after waking up from an eight-hour surgery.

She had a diffuse intrinsic pontine glioma (DIPG), a rare childhood brain tumour that forms at the base of the brain where essential body functions like breathing and heartbeat are controlled. Because of their location, the tumours can’t be surgically removed, and over time they become resistant to any treatments like chemotherapy.

There is currently no proven cure for DIPG, and most children diagnosed with the disease die within a year.

Isabella was given just nine months to live when she was diagnosed, but thanks to a variety of treatments including radiotherapy, a targeted cancer drug and chemotherapy, she lived for 28 months.

She died in October 2019, when she was five years old. Her parents, Assunta Trapanese and Victor Ortiz, paid tribute to their ‘beautiful princess’ at her funeral by dressing up as characters from the Disney film Frozen. Isabella was dressed up as the lead character, Elsa.

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

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‘Her final gift to the world’

Professor Chris Jones and his colleagues here at The Institute of Cancer Research, have made discoveries that have led to new understanding of this disease, including uncovering a possible genetic weakness in some cases that could be targeted by drugs. This research has led to collaborations with partners to discover, develop or repurpose drugs to target DIPG.

But because DIPG is so rare, tumour tissue is not often available to support further research and understanding of the molecular characteristics of the disease remains limited.

Knowing this, Isabella’s parents have donated samples of their daughter’s brain tissue to the ICR – which they describe as ‘her final gift to the world’. 

We've lost many vital research hours to the coronavirus crisis but the need for our work continues to grow. Please help us kick-start our research to make up for lost time in discovering smarter, kinder and more effective cancer treatments, and to ensure cancer patients don't get left behind.

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‘We tried to do the impossible’

Isabella’s mother, Assunta said they hope it will help scientists make a breakthrough in their research into the brain cancer that took their daughter’s life:

“When the doctor told us Isabella had DIPG, and there was no cure and nothing we could do, our world just ended. We looked for treatments around the world and tried to do the impossible and keep our little one alive – and the treatments she had were successful for a while, but of course it was just temporary.

“There desperately needs to be more research so that more children will survive in the future. We don’t want any more families to be in our situation, where it’s so hard to be without Isabella every day – you can’t imagine what that feels like.”

The support and dedication of our family charity partners, who have been touched by cancer, is crucial in driving forward our work to better understand and treat childhood cancers.

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An ‘extraordinarily altruistic act’

Professor Chris Jones, Professor of Paediatric Brain Tumour Biology at the ICR, said:

“We are deeply moved by the remarkable generosity of families donating their child’s tissue to us after such a heart-breaking experience.

“It has been extraordinarily altruistic acts like this which first allowed research groups like ours to study the biology of DIPG, and the community would not have developed the insights we now have into the disease without them.

“We are still desperately trying to turn our increased understanding into effective treatments, and donations such as these continue to provide us with a priceless resource with which to do so.”

 

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brain cancer DIPG
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