Diagnosed with a rare brain tumour at just three-years-old, brave Lyla O’Donovan has overcome a lot in her short life but has always been determined not to let it slow her down.
Now age seven, the schoolgirl who was diagnosed with a pilocytic astrocytoma – a rare brain tumour – and given a 50/50 chance of survival in 2016, has battled through ten brain surgeries, more than 30 MRI scans, meningitis and complications such as regular seizures and fluid on the brain (hydrocephalus).
The brain tumour has left Lyla with reduced mobility and seizures and during the operation to remove it in Bristol she lost movement in the whole of her left side – but she has bravely battled to regain her mobility. While she needs a wheelchair to help her get around and doctors don’t know how much her brain will develop, she has bounced back to being able to carry on with her favourite hobby dancing.
“She has remarkable resilience and just gets on with it,” said dad Paul. “She is very caring and thinks of other people’s feelings despite going through what she is dealing with. We don’t know what is going to happen in the future and we just want to make as many memories with her as we can.”
The family have since moved to Ushaw Moor in County Durham and Lyla’s latest operation took place in May 2020 at the Great North Children’s Hospital (GNCH) after doctors discovered her scar tissue from previous operations had stuck together with the brain stem, which may have been contributing to her seizures.
Paul said: “Unfortunately, the surgery hasn’t stopped the seizures as we hoped but Lyla hasn’t let that stop her, just a few weeks after the operation, she amazed us all when she managed to climb up to Penshaw Monument and Roseberry Topping.
“No matter what’s thrown at her she just gets on with it and is always thinking of others. She inspired me to give something back and thank the hospital while helping other children in a similar situation to Lyla.”
Despite her own challenges, Lyla has always been passionate about helping others and in 2018 she received a Child of Courage Award from the Chronicle for her bravery.
After winning, Lyla felt that poorly children everywhere should receive a certificate for being brave, and set up the “Lyla & Lilley’s Stars” project with her sister Lilley.
The sisters now regularly send out bravery certificates to children with illnesses around the world and in acknowledgement of her efforts Lyla was recently presented with an Inspirational Child award from Prince Harry at the prestigious Well Child Awards.
Lyla’s bravery and passion to help others has inspired many people around her but no one more so than proud parents Paul and Kirsty O’Donovan.
As a result, former army instructor Paul, 35, has raised more than £2,000 for the Great North Children’s Hospital Foundation to say thank you to staff at the Great North Children’s Hospital (GNCH) for saving his little girl’s life ‘over and over again’.
Joined by Champion Boxer Tommy Ward, Paul ran 20 miles from his home in Durham to the GNCH in Newcastle to raise money and buy toys for ward 1B, ’to help bring smiles to the faces of other children going through similar experiences to Lyla’.
Ward 1B is a regional neuroscience unit that looks after children who need medical and surgical care and specialises in the treatment and rehabilitation of children with head injuries and it is here that Lyla recovered from her operations.
The pair completed the sponsored run in three hours and arrived to a hero’s welcome from Lyla and staff from Ward 1B who held out a big ‘Well Done’ sign as mum Kirsty, 36, and brothers and sisters, Reece, 15, Olivia, 14, Lilley, 12, Harry, 9, and Henry, 2, looked on.
“We chose to support Ward 1B at GNCH as that is where she has recovered several times now and we just wanted to say thank you as the care has always been fantastic. It is a specialist ward and the kids who stay here can spend months recovering so it’s important they have lots of things to keep them entertained.”
Paul raised the £2,000 target and bought toys with the money but as donations have continued to come in, he would like to donate the rest to the hospital charity the Great North Children’s Foundation to use how they see fit.
Hearing about the donation to the Great North Children’s Hospital Foundation, Sharon Cairns, Senior Sister, Ward 1B said:
“We have been overwhelmed by the generosity shown by Lyla’s family and friends, their donation which included toys and instruments such as keyboards, bubble lamps, board games and mega blocks will help to keep our children and young people engaged and entertained on the ward as they recover.”
Lyla’s Neuro-Surgical Consultant, Mr Chris Cowie added:
“Lyla’s had a really tough time of it, having to go through so many surgeries at such a young age. Each time I see her, no matter what the situation or the reason for her attendance, she always has a smile for me! Her courage and patience are an example to us all.”
Dr Mike Mckean, consultant in respiratory paediatrics and clinical director of the Great North Children’s Hospital, said: “We are honoured that Lyla’s family have chosen to support our charity and wish Lyla well in her recovery from her latest operation.
“Working at the Great North Children’s Hospital gives us the chance to have a real impact on the day-to-day lives and long-term wellbeing of children and their families.
“Since we opened 10 years ago we have raised £3.5m through our Charity thanks to the tireless fundraising efforts of our patients and families, our staff and the kindness of strangers, which has gone towards improving patient care, funding vital equipment, supporting staff training and development and funding new and innovative research projects.”
You can support Paul on his JustGiving page.
