‘Our girl was diagnosed with inoperable brain tumour at 17 months and went blind one month later – she’s our superhero’

The parents of a young girl diagnosed with an inoperable brain tumour at 17-months-old, before going blind one month later and undergoing years of treatment, have said their daughter is their “superhero”.

Lisa and Matthew Taylor’s daughter Olivia was diagnosed with an optic nerve glioma, a slow-growing, usually benign brain tumour which forms around the nerves that carry information from the eye to the brain, in January 2018.

Olivia, now nine, from London, went blind almost “overnight” a month later and has lived with approximately 1% vision ever since, meaning she requires the use of a cane to help her walk and uses braille technology at school.

Olivia has had several chemotherapies and two major brain surgeries, leaving her with a “Harry Potter scar”, but her two teddies, both named “Corry”, have accompanied her to hospital to help her feel safe.

While Lisa, 40, said people often stare at Olivia and have made “awful” comments such as, “why is she walking asleep?”, the couple said her diagnosis has not “dimmed her sparkle”.

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.

“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, told PA Real Life.

“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.”

Speaking about her advice to other children, Olivia said: “You just need to be brave.”

After Olivia was born, Lisa, a lead recruiter, 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 said Olivia was “unsteady on her feet” while learning to walk and her head circumference was large, but since 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 to see other healthcare professionals – but she said her symptoms did not 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.

“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, Lisa and Matthew said Olivia woke up in her crib, screaming in pain, as the pressure from the large tumour had impacted her optic nerves to the point where she required surgery.

After being referred to The Royal Marsden in London, it was confirmed Olivia had lost her vision completely and Lisa said she will “never forget that day”.

“She literally went blind about a month later – it felt like it happened overnight,” Lisa added.

Since her diagnosis, Olivia has gone through three different types of chemotherapy, with gaps in between, along with two major brain surgeries – one of which has left her with a “Harry Potter scar”.

However, every time she has stopped chemotherapy, the tumour has started growing again, so when it came to discussions about a fourth type of chemotherapy, the couple decided to take a “huge risk”.

“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 “this amazing treatment”, specifically Trametinib and Dabrafenib, which they say 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% of these tumours have this mutation.”

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 said she enjoys school and her favourite subject is English and, along with a braille typewriter, she now uses technology called BrailleNote Touch, which transcribes braille into text.

Her friends and teachers are supportive, along with her sister and “bestie” Imogen, who is six, and she “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.

“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.”

While in her Rainbows group outside of school, Olivia attended a Coronation party for King Charles and she was given a teddy bear at the end, which she named “Corry”, inspired by the event.

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.

She was given a second bear later on, which is also named Corry inspired by the first bear, and the two teddies have accompanied her to her hospital appointments and scans.

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 at childrenwithcancer.org.uk/about-us/childhood-cancer-awareness-month, or view its campaign video at youtu.be/tYFrA_KBS28.