The family of a toddler who died from a rare brain tumour last month are calling on the Government for more research funding.

Orla Tuckwell, from Hertfordshire, was just 20 months old when she was diagnosed with a medulloblastoma, which had a mutation so incredibly rare that specialists could not find another case.

After exhausting all NHS treatment, Orla died last month - 11 months after diagnosis, and four months before her third birthday.

The Comet: Orla died when she was just two years old.Orla died when she was just two years old. (Image: Brain Tumour Research)

Her parents, Naomi and Adam, are now campaigning alongside the charity Brain Tumour Research to help reach 100,000 signatures on its petition to increase research funding, in the hope of prompting a parliamentary debate.


Speaking during Childhood Cancer Awareness Month (September) Naomi, 38, said: “We will always love Orla, and will always talk about her and keep her memory alive. She was so strong and courageous; such an inspiration to everybody who knew her.

“We don’t want this to be the end. We want to keep telling her story and will create a legacy for her, to try to push for more research and help other families in the future going through this.”

The Comet: Ava (aged 9), Orla, Adam, Poppy (aged 7) and Naomi.Ava (aged 9), Orla, Adam, Poppy (aged 7) and Naomi. (Image: Brain Tumour Research)

Orla had been constantly sick for weeks and started to cough up yellow bile before the brain tumour was discovered in September 2022.

The tot endured four operations before induction chemotherapy, followed by gruelling high-dose chemotherapy in February this year.

Orla was discharged in April, having dramatically improved, but relapsed in July. She died on August 12.


Naomi said: "If more research was done for brain tumours, and more was known about these mutations, Orla could have had more time, kinder treatment options or even the chance to live a full life.

“It’s shocking how little is known about this disease, and how under-funded research into brain tumours is.”

The Comet: Orla was discharged home in April, but sadly relapsed in July.Orla was discharged home in April, but sadly relapsed in July. (Image: Brain Tumour Research)

Brain Tumour Research is 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.

Charlie Allsebrook, community development manager at Brain Tumour Research, said:  "Brain tumours kill more children than leukaemia, yet historically just 1 per cent of the national spend on cancer research has been allocated to this devastating disease."

To sign the petition before it closes at the end of October, visit