A 15-year-old girl is "scared she will wake up one day and not be able to see" because of a condition that doctors have struggled to diagnose.
Lauren Williams has seen her vision deteriorate at an alarming rate. The problem, which started five years ago with a slight squint and headaches, now means the schoolgirl struggles to see more than six metres in front of her, and can no longer read things like food labels.
Lauren's Mum, Stacey Conway, took her daughter to see an optician in 2017 after a squint had "come out of the blue." The following tests then led to concerns there'd been a pressure build-up around Lauren's brain. However, five years later there has still been no diagnosis, and experts have warned Stacey that her daughter could soon be registered blind.
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Stacey, 36, who lives with her family in Caernarfon, said: "We've been told that if her eyesight stays this way, she can't ever drive a car. She wants to get a job in a café like her peers, but she wouldn't be able to.
"She's got questions I can't give her answers to. It's the not knowing what her future holds. She is scared she will wake up one day and not be able to see at all," WalesOnline reported.
When Lauren first visited the optician she was told her sight had recently worsened more than would be expected for her age. After further testing, the optician suspected there was pressure in Lauren's skull and advised she go to hospital immediately. A scan at Bangor's Ysbyty Gwynedd Hospital gave no definitive answers and Lauren managed for some time with stronger glasses — but her vision has declined so much she now struggles to see colours or slightly peripheral objects.
Stacey, who is fundraising for equipment to aid her daughter, said: "Lauren has a Shih Tzu puppy, and she's said to me that he looks like one big ball. She can't see his tail or legs.
"She wears normal glasses and looking at her you wouldn't be able to see she is visually impaired. At times she does bang into things. She makes jokes out of using her friends as guide dogs. She tries to be positive but it has had an effect on her self-esteem and anxiety.
"Her writing has become illegible. She can't read food instructions and use-by dates, she can't tell the time on clocks, she can't tell bus times, she can't read the labels on shampoo and conditioners — all the things we take for granted. Last Monday she said to me when we were in the supermarket, 'Can you show me which is the tuna sandwich?'
"She's up until 2am finishing coursework because it takes her longer. She wants to work hard whereas I would have said, 'Sod it.' She is a determined person."
Stacey added she has been taking Lauren to the Ysbyty Gwynedd every couple of months but feels nothing has been learned from the check-ups. "There is no ophthalmologist consultant in post and there hasn’t been for three years," said Stacey. "Locum doctors have been doing tests and the respiratory team have been looking over her results. The locum doctors say they will speak to neurology but nothing seems to happen. It just seems like a vicious cycle. I feel like she's been left by the wayside."
The mum was so dispirited by the treatment in Bangor that in February she travelled around 100 miles with Lauren to Alder Hey hospital in Liverpool. "I was just beside myself not knowing what to do," she said.
Alder Hey told Lauren there was nothing it could do that day but booked her in for a follow-up appointment. Next month she is scheduled to undergo electromagnetic testing at the hospital. The NHS had previously told Stacey there could be a two-year wait for the test, she said.
"It shouldn't be a postcode lottery," Stacey added. "I feel like we've had more support from agencies like RSBC [Royal Society for Blind Children] and the North Wales Blind Society than the NHS. It's been really stressful, upsetting, exhausting."
Following an enquiry by WalesOnline, the Bangor hospital has offered Lauren an appointment with a consultant but Stacey fears it is "too little, too late", adding: "It shouldn't take a call from a journalist." She said the treatment has been in stark contrast to the "really good" support from Lauren's school, Ysgol Friars in Bangor.
"In school she's got an Optelec which zooms in on the whiteboard for her," said Stacey. "She uses a laptop because she can't write anymore. The vision impairment teacher Heulwen Jones has gone beyond for Lauren and sat with her in GCSE exams to support her through it."
Stacey has started a GoFundMe page with a £3,000 target in the hope of getting Lauren a portable magnifier. "The cost of living crisis has made it hard and our disposable income is not what it was," she added. "As a family we want her to be able to have this equipment at home to promote her independence and not having to rely on her family members to read cooker dials or be her eyes."
Gill Harris, executive director for integrated clinical services at Betsi Cadwaladr University Health Board, responded to Stacey's concerns over Ysbyty Gwynedd. "We are sorry to hear that Ms Conway is unhappy with the care her daughter is receiving," she said. "We would urge her to contact us directly through our Patient Advice and Liaison Service so we can investigate her concerns.” You can read more health stories here.
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