Olivia lost her vision nearly eight years ago to an inoperable brain tumour that left her screaming in pain in her crib
Lisa and Matthew Taylor revealed their daughter Olivia always leaves people in tears as the nine-year-old is their bright, loving and bubbly “superhero” despite living with an inoperable brain tumour that left her with 1 per cent vision nearly eight years ago. Sharing their family’s story, the parents are urging others to advocate for their children and be more aware of hidden disabilities.
Olivia was first diagnosed with optic nerve glioma when she was 17 months old in January 2018, but Lisa believes medical professionals ‘missed’ the first warning signs as they had been taking her to the doctor for a number of different symptoms that seemed innocent at the time.
In honour of Childhood Cancer Awareness Month this September, Olivia is championing the Always By Your Side campaign by Children with Cancer UK, aiming to shed light on the challenges children encounter during treatment. Olivia offered a straightforward piece of advice for any other children going through a tough time: “You just need to be brave.”
It started when Olivia was learning to walk, Lisa said she was ‘unsteady’ and the doctors noted that her head circumference was quite large but chalked all of this up to the little one growing. Lisa then noticed her daughter had developed a lazy eye and took her to the opticians, but to no avail.
Lisa revealed to PA Real Life: “She was always advanced with her speech, playing and eating, but there were lots of little things. She had stopped using her cutlery, she wasn’t speaking as much and then she started being sick.
“We weren’t sure what was happening… but we knew there was something wrong. It was a few days before New Year’s Eve, I took her to the park, I put her down and she fell over. I said to my best friend at the time, ‘Right, that’s it. I’m not leaving the doctors until they fix her’.”
When Olivia fell during her GP visit, she was rushed for an ‘urgent scan’ that same day which detected the ‘enormous’ 8cm by 6cm tumour. The youngster was blue-lighted to King’s College Hospital in London but medics declared it was ‘too dangerous’ to operate near her optic nerves.
Several weeks later, Olivia was shrieking in agony in her crib as the pressure mounting in her skull became unbearable. The tumour had started to affect her eyesight and soon after, a referral to The Royal Marsden in London confirmed Olivia had completely lost her vision before turning two.
Lisa said it felt like it “happened overnight”. Since her diagnosis, Olivia has endured three different forms of chemotherapy and two major brain operations which left her with a “Harry Potter scar”.
Each time she ceased chemotherapy the growth began expanding again. Matthew explained: “The current chemotherapy wasn’t working, so we had two options.
“The first was, do we go back to a 1970s chemotherapy, where the side effects are horrible – infertility, she would lose all her hair, she would be sick all the time. Or do we go down the biopsy route to determine what the actual tumour is and then we can potentially get access to research drugs from trials.”
The pair opted for the biopsy last year and when Olivia awoke she had partial paralysis in her face which has since improved. However, thanks to the results of this examination, she became one of the first youngsters to receive a groundbreaking treatment through the NHS, specifically Trametinib and Dabrafenib, which has successfully reduced her tumour.
Currently, Olivia takes tablets and liquid medication each morning and evening from the comfort of her own home. Apart from a weakened immune system due to the treatment, Olivia is “doing so well” according to her medical team.
Matthew, a client service analyst, continued: “Most of her life has been on treatment. We’re battling the tumour side, but also the visually impaired side, so we’ve got two wars going on – but to Olivia, it’s the norm.
“She knows all the braille, she hits all her targets at school. She’s at a mainstream school, and she’s just so amazing with all of that.”
Lisa, a lead recruiter, revealed that Olivia does get stares and “awful” comments in public, like “why is she walking asleep?” but that the nine year old hasn’t let this or her diagnosis “dim her sparkle”. She’s been able to have tea with Queen Camilla, appear on EastEnders while thriving at a mainstream school.
Olivia also went to King Charles’ Coronation celebration where she enjoyed tea with Queen Camilla and was given a teddy she’s called Corry that now accompanies her to all of her hospital appointments and scans. The brave youngster has also appeared in an episode of EastEnders.
Her dad expressed: “Olivia has shown extraordinary courage and I’m so proud of her. Her tumour may have taken her sight, but it hasn’t dimmed her sparkle.”
