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LITTLE Olivia Taylor went blind after being rushed to hospital in the middle of the night in January 2018.
Her parents Lisa and Matthew Taylor had spent months trying to figure out the cause of her strange symptoms – from unsteadiness to being sick and having a lazy eye.
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After falling over at the park Olivia, from London, was rushed to hospital for an urgent scan and diagnosed with an optic nerve glioma in January 2018.
The slow-growing, usually benign brain tumour forms around the nerves that carry information from the eye.
Olivia, then 17 months, went blind almost “overnight” a month after being rushed to hospital and has lived with approximately 1 per cent vision ever since.
Now aged nine, the tot uses a cane to help her walk and braille technology at school.
Read more on brain tumours
After Olivia was born, Lisa, 40, believes several key symptoms were “missed” by medical professionals.
According to Brain Tumour Research, symptoms of an optic nerve glioma can include worsening vision, squinting, flickering eyes and double vision, as well as nausea, vomiting, lethargy and headaches.
Lisa, a lead recruiter, said Olivia was “unsteady on her feet” while learning to walk and had a large head circumference.
As she was a baby, doctors attributed this to her “growing”.
When Lisa noticed Olivia had a lazy eye, she took her to the opticians and healthcare professionals – but the tot’s symptoms didn’t improve.
“She was always advanced with her speech, playing and eating, but there were lots of little things,” Lisa said.
“She had stopped using her cutlery, she wasn’t speaking as much and then she started being sick.”
Olivia was even sick an hour before Lisa and Matthew tied the knot in August 2017 – but it took several months for Olivia to receive her official diagnosis.
“We weren’t sure what was happening… but we knew there was something wrong,” Lisa said.
“It was a few days before New Year’s Eve, I took her to the park, I put her down and she fell over.
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“I said to my best friend at the time, ‘Right, that’s it. I’m not leaving the doctors until they fix her’.”
Olivia ended up falling over during the GP appointment and was sent for an “urgent scan”.
That same day, in January 2018, Lisa and Matthew were informed Olivia had a “massive” brain tumour, which measured 8cm by 6cm, and she was blue-lighted to King’s College Hospital in London.
“We didn’t know what grade it was or anything, it was just horrific, terrifying,” Lisa said.
“It was literally the middle of the night… and when we arrived at the hospital, they said they couldn’t operate because it was too risky on her optic nerves.”
Just weeks after her diagnosis, Olivia woke up in her crib, screaming in pain.
The pressure from the tumour had impacted her optic nerves to the point where she needed surgery.
After being referred to The Royal Marsden in London, doctors confirmed Olivia had lost her vision completely – Lisa said she will “never forget that day”.
“She literally went blind about a month later – it felt like it happened overnight,” Lisa added.
Olivia is our little superhero
Matthew Taylor
Olivia has had several rounds of chemotherapy and two major brain surgeries, which left her with a “Harry Potter scar”.
Lisa said people often stare at Olivia and make “awful” comments like “why is she walking asleep?” – but the couple say her diagnosis has not “dimmed her sparkle”.
“When you see Olivia, she’s so loving, and everyone who meets her, they just fall in love with her,” Matthew, 39, a client services analyst, said.
“People will hear her story but then see this bubbly, little girl with her teddies, and they have a tear in their eye.
“Olivia is our little superhero.”
What is an optic nerve glioma?
An optic nerve glioma is a slow-growing brain tumour that forms around the nerves that carry information from the eye to the brain.
As the tumour grows it affects the nerves, causing problems with vision.
Three quarters of optic nerve glioma cases are diagnosed in children and teenagers rather than in adults.
This is a serious tumour but in most cases optic nerve gliomas can be successfully treated.
Only rarely does this tumour result in blindness.
Symptoms can include the following:
- Worsening vision
- Reading becoming more difficult
- Squinting
- Flickering eyes
- Double vision
- Blind spots
- Head tilt
- Eye protruding forward
If there is increased pressure in the head due to the size of the tumour, symptoms may also include:
- Nausea and vomiting
- Lethargy and irritability
- Headaches
Source: Brain Tumour Research
To mark Childhood Cancer Awareness Month this September, Olivia is fronting Children with Cancer UK’s Always By Your Side campaign to highlight the journeys that children face during treatment.
Speaking about her advice to other children, Olivia said: “You just need to be brave.”
Olivia has tried three different types of chemotherapy, but the tumour has started growing again each time she stopped.
Her parents decided to take a “huge risk” with her treatment.
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“The current chemotherapy wasn’t working, so we had two options,” Matthew explained.
“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 couple decided to go ahead with the biopsy last year and, when Olivia woke up, she had partial paralysis in her face.
Over time this has improved, although not fully, and the biopsy has enabled them to try an “amazing treatment” – Trametinib and Dabrafenib – which has shrunk the tumour considerably.
Olivia now takes tablets every morning and evening, along with a liquid medication, from the comfort of her own home – and Matthew said this is all thanks to research into trials.
“[The treatment] was successful in the research trials, and it’s moved onto the NHS, so she was one of the first kids under the NHS to have it,” Matthew said.
“So all this fundraising from other families and other people, it shows that it pays off.”
Lisa added: “It’s changed our lives because it’s targeted treatment and for the specific mutation of her tumour – only 10 per cent of these tumours have this mutation.”
‘Two wars’
Although Olivia has a suppressed immune system, meaning she is vulnerable to infections, she said doctors have told her she is “doing so well”.
She enjoys school, with her favourite subject being English, and “loves singing and chatting”.
“Most of her life has been on treatment,” Matthew said.
“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.”
Through Rainbows – a charity helping care for children with serious or terminal illness – Olivia attended a Coronation party for King Charles and she was given a teddy bear, which she named “Corry”.
Olivia attended Buckingham Palace to sing with her school choir for The King’s Christmas speech in December 2023, she had afternoon tea with Queen Camilla at Windsor Castle and she has even featured in an episode of EastEnders.
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She now has two “Corry” teddies that have been at her side in hospital to make her feel safe.
In support of Children with Cancer UK’s Always By Your Side campaign, Lisa and Matthew are encouraging parents to get any unusual symptoms checked and to advocate for their children.
They want to remind others not to be ignorant of “hidden disabilities”.
“Olivia has shown extraordinary courage and I’m so proud of her,” Matthew said.
“Her tumour may have taken her sight, but it hasn’t dimmed her sparkle.”
For more information and support, visit Children with Cancer UK’s website.
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