New brain tumour medication 'groundbreaking', says mum of Milton Keynes boy who died

  • Ravneet Nandra met 12-year-old Aaliyah who has been part of the trial

The mother of an 11-year-old boy who died from a brain tumour said new targeted treatment for children, with fewer side effects than chemotherapy, had the potential to be "groundbreaking".

Shay Patel from Milton Keynes died in 2021 after going through chemotherapy for his brain tumour for 22 months.

His mother Nicola Patel said new medication which targets gliomas - a rare type of brain cancer - is kinder than the alternative treatments.

The new medication is a combination of two drugs (dabrafenib and trametinib) and is now available on the NHS.

Clinical trials show it lessened the need for chemotherapy, improved survival time and in some cases, made tumours completely disappear.

Shay Patel died in 2021 aged 11, 22 months after his diagnosis. Credit: ITV News Anglia

Mrs Patel said: "Personalised medicine is really gaining ground and I think that's going to be where a lot of the breakthroughs do happen. And hopefully this is just the start.

"It's going to be difficult for children who don't have that type of mutation and I think for them, it's really important to just keep going and keep focusing on that research so that we get to the point where this is a treatable disease."

Twelve-year-old Aaliyah, who lives in the East of England, was diagnosed with an inoperable brain tumour after a routine eye test.

She has been part of the trial for the past four years and said without the medication, life would be a lot harder.

She said: "I think it's much better because I've been able to do much more in school and go out with friends.

"If I had chemo I don't think I'd have been able to do as much because I'd have to go to the hospital."

Hugh Adams, from Brain Tumour Research said: "Historically the treatment has been cruel. They've been very difficult. Sometimes the treatments have been almost as damaging as the tumour.

"So, we are really encouraged by this. It's only a small cohort size at the moment but any progress in this area is to be applauded. Then hopefully it can be moved out wider for other people to pick up who have been diagnosed with paediatric brain tumours."

The charity says 500 children are diagnosed with brain tumours each year in the UK, and 175 of those will have a glioma.

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