After nearly losing her little girl to a brain tumour, Eston mum Debbie Aspery is now campaigning to raise awareness of the symptoms. She talks to Ruth Addicott about the battle she faced to get a diagnosis

WHEN Eston mum Debbie Aspery tried to tell doctors there was something wrong with her little girl, she was told she was being ‘over protective’. Five months later, Darcy was diagnosed with a brain tumour.

Debbie, 28, is now campaigning to raise awareness of the symptoms and stop lives being lost to the devastating disease.

Brain tumours kill more children and adults under the age of 40 than any other cancer, according to the charity Brain Tumour Research, yet just one per cent of the national spend on cancer research is allocated to the disease.

A total of 16,000 people each year are diagnosed with a brain tumour. Fewer than 20 per cent survive beyond five years and unlike most other cancers, deaths from brain tumours are on the increase.

Darcy was born to Debbie and her partner, Gareth Walsh on July 13, 2013. Healthy and happy, she was crawling by eight months and by 11 months had taken her first steps.

Then, suddenly, in December 2014, Darcy struggled to get up off the floor. “We took her to A&E at James Cook University Hospital in Middlesbrough where we were told she’d fractured her wrist,” says Debbie. Darcy’s wrist was put in a temporary cast, but in January 2015, she stopped using her right hand, her right foot was inverting and she kept walking on her toes, causing her to fall over.

As her wrist appeared to have healed, Darcy was referred to the orthopaedic department at JCUH, which said her bones were fine and she should see the GP to be referred to a neurologist.

At the end of March, Darcy began to suffer from vomiting, which was diagnosed as a stomach bug and then an ear infection. “All the while she continued to walk in the same strange manner and had her right hand in a tight fist,” says Debbie.

Her symptoms showed no sign of improving so Debbie went back to the GP. “Darcy’s right ear was inflamed, her throat was red, her tonsils were enlarged and she had a blanching rash on her back,” says Debbie. As a urine sample showed no abnormality, Darcy was prescribed amoxicillin and paracetamol and sent home.

When Debbie finally received the letter confirming an appointment to see a neurologist, it was more than 13 weeks away and Darcy was deteriorating by the day. Once again, she was diagnosed with an ear infection and a virus and referred to the paediatric assessment unit at JCUH where Debbie was told it was gastroenteritis.

On May 1, Darcy collapsed.

“I took her to A&E where despite everything I told them, they insisted she had sprained her leg,” says Debbie. “I got on the bus and went straight to the GP’s surgery and demanded a more urgent referral to the neurology department.”

Desperate, Debbie started googling Darcy’s symptoms. Darcy was vomiting, had a temperature and couldn’t stand. Suspecting septic arthritis, the GP sent her back to paediatrics at JCUH. “I demanded and demanded, saying I wanted her brain scanned. I knew there was something wrong with her brain,” says Debbie.

A few days later, the hospital arranged for Darcy to have an MRI scan which revealed a 4cm tumour in her brain. “My world just stopped,” says Debbie. “I collapsed in tears, thinking about all those months of being ignored. It was horrific.”

Darcy, then 21 months old, was rushed by ambulance to the Great North Children’s Hospital at the Royal Victoria Infirmary in Newcastle where Debbie and Gareth were told the tumour was causing fluid to build up in her brain which was pressing on nerves and causing the weakness in her right side.

The next day, Darcy underwent a five hour operation. The tumour was a low grade polycystic astrocytoma and Debbie was told if Darcy hadn’t had the MRI scan when she did, she would have died within days.

Although there was a small part of the tumour the surgeons couldn’t remove, it would be monitored and Darcy made a quick recovery. But within hours of being discharged, she was re-admitted with an infection and found to have fluid in her brain.

Over the following weeks, Darcy became critically ill and Debbie feared she could lose her a second time. Darcy underwent six operations and, miraculously, pulled through.

Then shortly after her second birthday, a scan showed her tumour had started to re-grow. Darcy is now half way through a year of chemotherapy, but is making good progress. “She just smiles and gets on with it,” says Debbie. “I hug her closer each day because I am so lucky she is still here.”

Debbie is now calling for greater awareness of brain tumours and their symptoms.

“We feel the GPs aren’t trained enough to spot brain tumours. There are not enough paediatric doctors within the area, there is not enough information and that is why children like Darcy are being mis-diagnosed,” she says.

“I fought and fought and fought for a diagnosis, but it was impossible. It felt as though they were fobbing me off every time. One doctor told me I was just a first time over-protective mum, but mothers know when their children are seriously ill and sometimes you have got to keep knocking on the door until someone listens.”

National Brain Tumour Awareness Month will culminate in Wear A Hat Day tomorrow. For further information, visit braintumourresearch.org/wearahatday