Mum of Broxbourne girl with rare brain tumour calls for kinder treatments

Orla Tuckwell died less than a year after she was diagnosed with a brain tumour

The mother of a two-year-old girl who died from a rare brain tumour is campaigning for more research to enable "kinder treatments" for children.

Naomi Tuckwell's daughter, Orla, was diagnosed with a medulloblastoma which had a very rare mutation and she died less than a year later.

Specialists could not find another case of it anywhere in Europe or America.

Orla's family, from Broxbourne, Hertfordshire, is backing a campaign for more brain cancer funding.

"If we can help other families, then we'll feel like we have done something right", her mum Naomi Tuckwell told BBC Three Counties Radio.

"We wouldn't want anybody to go through what we've been through. When you see your child going through that... it's horrific."

Orla was treated at Great Ormond Street Hospital

Last September Orla started vomiting frequently leading doctors to initially think she had a gut issue.

Then a CT scan "showed mass fluid on her brain" and Orla was rushed into Great Ormond Street Hospital (GOSH). in London.

The family was told Orla had an extremely rare malignant brain tumour.

The toddler endured surgery and high-dose chemotherapy and it appeared that her condition was improving, but in July she became sick again.

"My gut feeling was that something wasn't right," said Ms Tuckwell, and Orla was taken back to GOSH.

Orla died less than a month later.

"They just didn't expect her to relapse, based on what they knew of her tumour", her mum said.

"It was a big shock to all of us because of how well she'd been doing."

Orla, who loved dressing up in Disney princess costumes, pictured here after undergoing cancer treatment.

Despite Orla's ordeal, her mum said the little girl was always "smiling, laughing and happy".

"Even throughout her treatment, nothing stopped her. When she was really unwell she'd sleep but the minute she felt the slightest bit better, she'd be up dancing, in her princess dresses."

Ms Tuckwell said better funding and research could help children like Orla.

"We need more research to have kinder treatments. Children are given adult medications on higher doses. Paediatric brain tumours in particular are hard to treat."

Orla with her parents and sisters in hospital

Charlie Allsebrook, community development manager at Brain Tumour Research, said: "Sadly, Orla's story is not unique. Brain tumours kill more children than leukaemia, yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease."

The charity said that less than £11m has been spent on brain cancer research, five years after the government announced £40m.

A Department of Health and Social Care spokesperson said: "We've specifically allocated £40 million for research in this area, on top of £1 billion a year for wider health research.

"We've invested in every suitable research application made and the funding will continue to be available to develop new treatments and therapies for brain tumours."