Girl diagnosed with epilepsy due to ‘vacant’ expression but it was brain tumour

A schoolgirl has opened up about her battle with a rare brain tumour which left her with a “vacant” expression which doctors mistakenly thought was epilepsy.

Maisie Dury, now 16, from St Andrews, Fife in Scotland, first began displaying signs that something wasn’t right when she was just two-and-a-half years old.

The youngster’s parents noticed she would often sit with a ‘vacant’ expression on her face and began suffering from terrifying seizures.

They sought medical advice from their GP who referred them to a specialist but warned that she could face a three month wait as her case was “not urgent”.

Her parents, Vanessa and Ollie, quickly sought a second opinion from doctors in London who went on to diagnose her with epilepsy.

They decided to carry out an MRI scan – which is not routine – and discovered a low-grade central neurocytoma lurking in the centre of her brain.

She was admitted to hospital and underwent surgery to have it removed – but faced a lengthy wait to discover if it would return.

Maisie has now turned her efforts to supporting the charity Brain Tumour Research in a bid to help find a cure.

She said: “It all started soon after I turned two-and-a-half.

“My parents weren’t unduly worried but they mentioned it to our doctor, who suggested it could be a form of epilepsy and she referred us to a specialist.

“Over the next few weeks, I began to have seizures, during which I would shake and appear to lose control.

“The hospital told my parents that my condition wasn’t urgent and we would have to wait three months for a referral.”

After being seen at hospital in London, Maisie was diagnosed with a common form of epilepsy and given medication for the seizures.

Expecting to return home the same day, her family were heartbroken to discover that the MRI scan had found the brain mass.

Maisie explained: “My mum and dad were completely devastated. It was a total shock.

“The following day, they were told that my tumour was in the centre of my brain, in an unusual position.

“Luckily, I had an amazing surgeon, who took time to explain everything and went ahead with the operation the next day.

“In 2010 we moved from London to St Andrews. I’ve continued to be closely monitored with regular scans at Ninewells Hospital in Dundee.

“At first my scans were every six months and until the age of 13, I had to have them under general anaesthetic.

“They were reduced to being annual and now they are every 18 months.

“I’m always anxious waiting for the results and it can be overwhelming but as the years have gone by, I’ve been more optimistic. The chances of it coming back now are slim.”

Maisie is now taking part in the 10,000 steps a day challenge to raise funds for Brain Tumour Research.

She has expressed concern about the lack of information about tumours in children and the lengthy delays some face for a diagnosis.

She added: “Since my diagnosis, my family has been passionate about raising awareness of brain tumours to highlight the lack of funding into research for this devastating disease.

“The launch of Brain Tumour Research could not have been as successful without my mum’s dedication to the cause.

“After all the amazing support from my family and friends over the years, it feels good to be taking on a challenge under my own steam, having overcome the disease myself.

“Brain Tumour Research remains a charity really close to my heart. I am one of the lucky ones.

“There are so many children out there who do not get diagnosed early enough and whose symptoms are often missed.

“I worry about the effect of the coronavirus pandemic on brain tumour patients, especially children, who may not be seen quickly enough to get a diagnosis or to receive the treatment they desperately need.

“More children die of brain tumours in the UK than from any other cancer.

“I think of those children and their families every day and just like my loved ones, I will continue working to support the brain tumour cause in whatever way I can.”