I was told my girl's headaches weren't a worry – months later she couldn't talk05/05/2022
A MUM is watching her daughter re-learn to talk and walk after her headaches turned out to be far more serious than doctors thought.
Lacey-Lee Kelly, six, complained of headaches “now and again” last summer.
Her mum, Lisa, from Penydarren, Merthyr Tydfil, claims opticians told her not to worry, despite finding pressure at the back of her left eye.
But Lacey-Lee began vomiting in the night and became “clumsy”.
When Lisa took her daughter to the GP, they suggested a food intolerance was to blame.
Unconvinced, and with Lacey-Lee's symptoms worsening, Lisa took her back to the optician, Wales Online reported.
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Both eyes now had pressure building behind them, and Lacey-Lee was immediately sent for tests at the hospital in November 2021.
Lisa and her partner Shaun were taken into a side room and given some devastating news – their daughter was living with a slow-growing brain tumour.
It may have been growing since birth, but was now starting to show symptoms.
Lisa said: "At first it didn't really sink in with me, but deep down I knew it was [a brain tumour] all along.
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“There was a bit of disbelief, but I always had that thought at the back of my mind.”
Lacey-Lee was taken by ambulance to the Noah's Ark Children's Hospital for Wales in Cardiff where further scans showed that the fluid build-up in her brain was dangerously high.
She was rushed into emergency surgery where 80 per cent of the tumour was successfully removed.
Fortunately, a biopsy revealed that the tumour was not cancerous.
But because it had been situated on her cerebellum, Lacey-Lee was set for a barrage of problems.
This part of the brain regulates coordination, movement, balance, and functions such as breathing and heart rate.
Hospital staff explained to the family that, due to Lacey-Lee's age and the location of the tumour, she could develop a condition called posterior fossa syndrome post-surgery.
It can occur when a child has had surgery to the back of the brain.
The symptoms, which may be present straight after surgery, can include loss of speech, weakness and poor balance.
Lisa said: “When Lacey-Lee woke from her operation, she couldn't speak at all and she could only move her fingers slightly. She was just a shell.
"She'd open her eyes and there would be this vacant look. It was horrendous."
Lacey-Lee had to learn to do almost everything from scratch, including using her arms and hands for the smallest tasks such as picking objects up.
Just before Christmas 2021, Lacey-Lee spoke after four weeks of silence to say “no”, shocking her mum.
Lisa said: “It did take a while for other words to come. She can now say absolutely loads – and I don't even mind if she swears."
The hospital's neuro rehabilitation team encouraged Lacey-Lee by playing games that incorporated her favourite things, such as Disney princesses.
Over the four months she was in rehab, the staff got to know her so well that for her “farewell celebration”, they hosted a mermaid party with dancing, cupcakes and glitter.
On April 26, Lacey-Lee was discharged from hospital able to roll, move her arms and legs.
She is still unable to walk and relies on a wheelchair to move around, but has started to do so with some support.
The youngster continues to have physiotherapy twice a week and will soon be phased back into primary school.
Children with posterior fossa syndrome usually make significant improvements, but have long term difficulties that could need rehab for many years.
Lisa said: "Fingers crossed she'll make a full recovery. It's just about retraining the brain to do everything again.
“We just want the old Lacey-Lee back – but I'm just lucky we pushed for her to be seen again.
“If we hadn't the doctors said she would have eventually had stroke-like symptoms."
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The Noah's Ark Charity – which helped fund the equipment needed for Lacey-Lee’s treatment – will be holding its first ever 5K Superhero Dash this September to raise money.
Visit www.noahsarkcharity.org/superhero-dash for more information.
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