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Isabella’s diagnosis was “death sentence”

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15 June 2023

A mum who donated her five-year-old daughter’s brain for research after she died from a brain tumour is calling for support of our new petition.

Isabella Ortiz was diagnosed with a diffuse intrinsic pontine glioma (DIPG) in June 2017. She had chemotherapy but when she ran out of treatment options on the NHS, her parents crowdfunded £120,000 to pay for a private trial at The Harley Street Clinic in London.

Isabella’s mum Assunta said: “We quickly learned what a DIPG diagnosis really meant. It was a death sentence. It wasn’t if Isabella would die, but when.”

The clinical trial extended Isabella’s life, but sadly she died on 19^th October 2019.

Assunta is now supporting our petition calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.

She added: “Money is so important because, without it, there is no research. The Government needs to invest much more into studying DIPGs because so much is still unknown about them. We donated Isabella’s tissue for research but it took several months for that to happen, so I want to see a more effective procedure for parents to be able to donate their children’s tissue for research. Only then can the researchers test it to see how DIPG mutates so they can then develop drugs that counteract that. The donation process needs to be quicker and easier so other children don’t die for nothing.”

We need your support to reach our goal of 100,000 signatures in the hope of prompting a parliamentary debate. Every signature counts – please sign here.

Once you have signed, please share the petition with your networks as widely as you can – via social media, email, text message and WhatsApp – and help spread the word.