01 Oct 2019

Brave toddler has ‘miracle’ surgery for rare brain tumour detected after crucial eye test

Brave toddler has ‘miracle’ surgery for rare brain tumour detected after crucial eye test: The camera flash showing a white glow in Boo’s eyes before the diagnosis. - Copy

Youngster experiencing poor balance, extreme thirst and vomiting undergoes life-saving treatment thanks to Vision Express detection

A widowed mum of three from Silverburn, Glasgow is urging others to pay attention to warning signs ahead of National Eye Health Week (23 – 29 September) after her daughter’s rare brain tumour was picked up thanks to an eye test.

Karen Lee-Johnston noticed her daughter Erika, known by friends and family as Boo, had a dilated pupil in her right eye, was vomiting, had regressed to crawling due to poor balance, and had extreme thirst - but she had no idea what was causing it.

Karen said: “It’s clear now that there were warning signs, but at the time you never think ‘brain tumour’.”

Karen took Boo to Vision Express at Tesco Silverburn earlier this year. She said: “I thought children as young as two would be turned away from an optician, but my friend urged me to phone my local Vision Express. I explained what was happening with Boo’s pupil, and we were told to go to the store within the next 30 minutes.”

Boo was seen by Vision Express optometrist Aaron Spears who made an emergency hospital referral. Karen said: “Aaron was amazing – he persisted with Boo, who is very photophobic. He called the hospital and told them to expect us and that they needed their ophthalmologist registrar on call immediately. I knew it was more serious than standard tests, but something like a brain tumour still didn’t cross my mind.”

Boo had further tests at the hospital that day, including a CT scan which ultimately detected the condition. Karen said: “We were waiting in a shared ward and a nurse told me she would look after Boo whilst I spoke to a doctor in a private room – at this point, I felt sick. There were a lot of nurses and doctors in this tiny room and I’m a straight up type of person, so I said, ‘This isn’t good news, is it?’. One of the neurosurgeons said, ‘No’.”

The CT scan had detected a growth, but more scans were needed to confirm the type and severity of it. Boo underwent mapping of the brain with an MRI scan, revealing the growth was Craniopharyngioma – a rare brain tumour most commonly found in children, with just 30 cases per year in the UK and no known cure. It was pushing into the optic chiasm causing Boo’s vision and balance problems. Karen said: “The doctor told me that she most likely would have died if we had left it another one or two weeks.

“One in 20 million get this type of tumour and even though it’s benign, the oncologist said it’s in a malignant place. Boo is due to start her first cycle of chemotherapy shortly to reduce it further. We hope that the chemotherapy cycles with proton beam therapy will give Boo’s head and face more time to grow, so she can have a less invasive form of tumour surgery - a route through her nose leaving no scar and less risk associated overall.”

We were told that she had completely lost her vision in her right eye and she underwent surgery to try and save the sight in her left eye. Thankfully, following the surgery her sight came back in both eyes – it was a miracle. People don’t believe me when I explain what has happened to our family and I suppose it is quite extraordinary, but it could happen to anyone. Her future won’t be easy but she’s alive and has her sight - Aaron saved her life.”

Vision Express optometrist Aaron Spears said: “Boo was showing classic symptoms of a Craniopharyngioma tumour, which grows above the pituitary gland – a pea-sized gland that controls many vital functions. This explains why Boo was often unstable on her feet and was having optical issues. Thanks to the referral, she got her scans and the consultant phoned me back later to say I had made a good spot. Parents with any concerns for their children’s sight should have it checked out at their local optician as soon as possible.”

Vision Express has partnered with Vision Matters for National Eye Health Week 2019 to raise awareness of the importance of an eye test as an essential health check and encouraging screen users to take regular breaks via its campaign launching on Friday 27 September called The Big Blink. For further details visit: www.visionmatters.org.uk/TheBigBlink

Vision Express is launching free eye tests nationwide for National Eye Health Week, launching on Monday 23 September. The offer is valid when booked online at www.visionexpress.com, where a voucher can be downloaded.

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Vision. Taken Seriously

Contact information

Claire Stuart

Senior PR Manager


0115 988 2138

About Vision Express

Vision Express is one of the largest optical retailers in the UK and part of GrandVision, the global leader in optical retail operating in more than 40 countries, spanning over 6,500 stores and online.

With almost 600 stores nationwide, Vision Express first opened its doors in Newcastle in 1988. Built on a passion for the profession, it has gone from strength to strength, driven by a commitment to unparalleled customer service and providing the best individual optical care, the right product and great value. Customers can select from a vast range of genuine designer brands and the latest technology lenses, through to complete glasses from £39.

With around 6,000 employees, Vision Express makes a significant difference to the communities it operates within, and the organisations it chooses to support. As part of its commitment to Vision. Taken Seriously, and as a responsible and caring retailer, Vision Express is proud to partner with a range of healthcare charities, which have touched the lives of customers and teams. These companies provide vital support to people affected by vision-related conditions. They are part of the Vision Express Charity Project and include:

  • Childhood Eye Cancer Trust (CHECT)
  • International Glaucoma Association
  • Macular Society
  • Stroke Association
  • Temple Street University Hospital
  • Brake