BRAVE Lyra Cole is excited about her first day of school after overcoming her brain tumour nightmare – a day her parents feared would never come.

She was just five months old when she had emergency surgery to remove a brain tumour after her symptoms were repeatedly misdiagnosed as a virus.

But now Lyra, from Highbridge, is a bright, confident and friendly four-year-old who will start at Berrow Primary School next Tuesday morning.

Somerset County Gazette:

Dad Dan, 36, said: “The first inkling we had that anything was wrong came in October 2013 when we noticed Lyra seemed to have lost her appetite and she developed a rash.

“The doctor told us it was a virus but the symptoms didn’t go away and we persisted as we weren’t happy with the diagnosis. Lyra seemed to be very tired and didn’t eat much. Then she started vomiting two or three times each day.”

First-time parents Dan and Lyra’s mum Ellie Hawkes, 26, went to their GP four times with their sick baby, each time being assured it was just a virus and that Lyra would get over it.

Unconvinced by this explanation and seeing their daughter deteriorate, they took her to hospital near their home in Highbridge. Doctors initially thought Lyra might have meningitis, until a CT scan revealed she had a tumour the size of a small orange growing in the back of her brain.

“Ellie and I were numb and in total shock,” said Dan. “Although we didn’t believe she had a virus, we never in our worst dreams thought it would be this.”

Lyra was diagnosed with a low-grade choroid plexus papilloma, a rare form of brain tumour that can particularly affect infants. She was immediately transferred to Frenchay Hospital in Bristol for an 11-hour operation.

Somerset County Gazette:

The surgery was successful but, within months, the family were facing fresh fears as it became obvious that Lyra was struggling to see. “She had always been a quick developer and crawled early”, said Dan. “So when Lyra suddenly started crawling into doors we knew something wasn’t right. It became so bad that she could only distinguish night and day.”

Just a month after Lyra’s first birthday, she underwent the second surgery of her short life to remove a cyst growing on her optic nerve, a complication from her earlier operation.

Dan said: “Thankfully, by the time she came round and was back on the ward it was obvious her sight was coming back. Lyra looked happy and, instead of looking through us as she had previously done, there was a discernible difference that she was actually looking at us. She reached out to touch Ellie’s eyelashes – that was a lovely moment and a nice confidence boost for us all.”

Since her last operation in 2014, Lyra has recovered well. Her regular MRI scans and check-ups have been gradually reduced in frequency until and now happen annually. She was discharged from Bristol Eye Hospital earlier in the summer.

She is now looking forward to starting school with a scar hidden underneath her hair.

“The doctors told us to treat her as if it never happened as it is very unlikely that a tumour of this type will come back,” said Dan.

“We used to get very anxious at first but now we try not to panic. Lyra adores gymnastics and dancing, she’s a real performer and loves talking to people. We do get her checked out though if anything happens to her head. She fell off a bouncy castle recently and banged her head so that meant a trip to hospital.”

Lyra now has a little brother, Charlie, 17 months, and is loving being a big sister. “She’s so clever for her age,” said Dan. “She can’t wait for school and to wear her new ‘nooniform’ as she calls it.

“We know that we are one of the few lucky families to be able to tell her survival story. Funding for research into brain tumours needs to be increased, it’s just not enough.”

Brain tumours kill more children than leukaemia, according to the charity Brain Tumour Research, yet just 1 per cent of the national spend on cancer research has been allocated to this devastating disease.

Hugh Adams, from the charity Brain Tumour Research, said: “It’s wonderful to see Lyra grow up and head off to school.

“Sadly, positive stories like hers are nowhere near common enough. Less than 20 per cent of those diagnosed with a brain tumour survive beyond five years old compared with an average of 50 per cent across all cancers. Brain Tumour Research is focused on funding sustainable research to find a cure for brain tumours, so more families can see their children grow up.”