An “inspirational” toddler with a brain tumour so rare specialists could not find another case has died.

Her death has prompted her parents to call on the government for more research funding.

Orla Tuckwell was just 20 months old when she was diagnosed with a medulloblastoma which had an incredibly rare mutation.

Watford Observer: The Tuckwell family. The Tuckwell family. (Image: Tuckwell family)After exhausting all NHS treatment, she died 11 months later on August 12, 2023, four months before her third birthday.

Watford Observer: Orla during and after treatmentOrla during and after treatment (Image: Tuckwell family)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.

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.”

Watford Observer: Orla with her mum Naomi and her sisters.Orla with her mum Naomi and her sisters. (Image: Tuckwell family)Orla, who lived in Broxbourne, Hertfordshire, with her family, had been sick for weeks and started to cough up yellow bile before the brain tumour was discovered in September 2022.

Unable to find another case of this anywhere in Europe or America, specialists were unsure how well the NHS standard of care would treat the tumour, so was moved from standard to high-risk protocol.

She was too young for radiotherapy, but endured four operations before induction chemotherapy, followed by gruelling high-dose chemotherapy in February 2023.

Watford Observer: A Tuckwell family picture.A Tuckwell family picture. (Image: Tuckwell family)Eventually, Orla’s condition improved drastically, and she was discharged in April 2023.

But as she approached three-month scan in July, Orla started showing signs of a possible relapse.

It was found that the tumour had spread and could not be operated on. She was later moved to Haven House Hospice where she passed away surrounded by her parents and two sisters.

Watford Observer: Orla during the period she was out of treatment Orla during the period she was out of treatment (Image: Tuckwell family)Naomi added: “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.”