A COUPLE whose daughter was diagnosed with a brain tumour after more than two years and 30 visits to doctors are urging other parents to trust their gut as part of a campaign to raise awareness about the condition.
Shortly before Lyla O’Donovan, now five, from Ushaw Moor, near Durham, was diagnosed with the tumour, her parents Kirsty and Paul were told that she might be playing up for attention.
Mr O’Donovan, who is in the Army, based in Durham, said: “Looking back now I think, yes the doctors didn’t pick it up, but everyone is human. It’s the way they spoke to my wife and said Lyla was role playing and the way the doctors fobbed us off.
“I wish we were stronger in saying that we knew there was something wrong.
“We want to say to parents to always fight for that second opinion if the first doesn’t seem right. You know your child better than anybody, if you really think something is wrong, trust your gut and don’t give up.”
The family was living in Germany when 18-month-old Lyla started showing symptoms. Despite undergoing dozens of tests for all sorts of conditions, from cystic fibrosis to lactose intolerance, doctors were unable to identify what was wrong.
After relocating to Devon in 2015, her symptoms worsened when she started getting headaches, becoming dizzy and falling over.
Her parents were told that she could be suffering from an ear infection, while doctors also suggested she might be playing for attention.
It wasn’t until September 2016 she was given an MRI scan and was diagnosed with a pilocytic astrocytoma, a non-cancerous tumour, and was rushed to surgery.
The father-of-six said: “The tumour was pressing so much the doctors couldn’t believe she was walking, let alone running around and talking.”
He added: “Our world fell apart.”
The couple, who are originally from Hartlepool, have returned to the North-East because of Lyla’s illness and are now backing The Brain Tumour Charity’s HeadSmart campaign, which is raising awareness to drive down diagnosis times.
Lyla is being monitored at the Royal Victoria Infirmary (RVI) in Newcastle, and has just returned to Bearpark Primary School following her latest operation at the end of February.
Mr O’Donovan said: “I’m a massive believer in that if you have information that could help someone, you should try your hardest to help.
“If we share our story and give advice about we deal with it and that helps one person I’ll be over the moon.”
HeadSmart, a UK-wide campaign, is run as a partnership between The Brain Tumour Charity, The Children’s Brain Tumour Research Centre and the Royal College of Paediatrics and Child Health and has so far reduced average diagnosis time from 13 weeks to 6.5 weeks.
Dr David Jenkinson, chief scientific officer, said: “We are hugely grateful to Lyla’s family for sharing her story.
“Raising awareness of this terrible disease and its symptoms is vital to avoid the distress caused by a delay in diagnosis.”
- To follow her story, visit www.facebook.com/LylasJourney1
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