‘She can say absolutely loads – and I don’t even mind if she swears’
WHEN six-year-old Lacey-Lee Kelly first started complaining of headaches last summer, her mother Lisa thought she may need glasses just like her older brother did at the same age.
A scan at the opticians revealed some pressure at the back of her left eye, but the family were told not to worry and come back in three months.
But the headaches persisted and, soon after, she also started becoming more “clumsy” and waking in the night to be sick.
She was taken to the GP where her symptoms were thought to be caused by a food intolerance and the family were asked to keep a diary of what she ate.
Unconvinced, and with Lacey-Lee’s symptoms worsening, they returned to the optician. This time, the scan revealed building pressure behind both eyes and she was immediately referred to the Royal Glamorgan Hospital in Llantrisant.
The next day, after a series of eye tests and scans, 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, which she may have had since birth.
“At first it didn’t really sink in with me, but deep down I knew it was [a brain tumour] all along. There was a bit of disbelief, but I always had that thought at the back of my mind,” said mum Lisa, from Penydarren, Merthyr Tydfil.
“Most of the time she was just a normal child running around and playing. It was only now and again that she’d complain of headaches.”
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.
Doctors decided that she would need urgent emergency surgery which was successful in removing 80% of the growth.
Thankfully, a biopsy confirmed that the tumour was not cancerous, but it had been situated on her cerebellum, a part of the brain which regulates coordination and movement and helps maintain balance.
Hospital staff had explained to the family that, due to her age and the location of the tumour, Lacey-Lee could develop a condition called posterior fossa syndrome post-surgery.
Symptoms can include loss of speech, weakness and poor balance.
“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,” Lisa added. “She’d open her eyes and there would be this vacant look. It was horrendous.”
What followed was a long road to recovery in which Lacey-Lee had to learn to do almost everything again, almost like a newborn baby.
Starting small, the hospital’s neuro rehabilitation team gently began retraining her brain by encouraging her to move objects with her fingers. As soon as she was well enough, they sat LaceyLee up and started encouraging her to move her arms by playing little games that incorporated her favourite thing – Disney princesses.
Lacey-Lee, who wasn’t able to speak at all for weeks after her surgery, said her first word – “no” – just before Christmas 2021.
“I was so shocked when she said it that I don’t even know what it as in response to,” Lisa admitted. “But 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.”
Lacey-Lee’s hospital rehabilitation continued for another four months with her rehab team using different locations like the sensory room, garden and hydrotherapy pool to keep her engaged and motivated.
They got to know Lacey-Lee so well that they could build sessions around the things she enjoyed.
By the time it came to her surprise “farewell celebration”, the physio team knew exactly what she’d want – a mermaid party with dancing, cupcakes and glitter.
Now, thanks to her sheer determination, Lacey-Lee is able to roll, move her arms and legs and is even starting to walk with support.
She’s been working hard with her physio team over the last few weeks on a mermaid-themed dance routine which was caught on camera last month.
A spokesperson for the Noah’s Ark Charity said: “It’s safe to say that watching Lacey-Lee move in ways that would have been completely impossible for her only a few short months ago was the highlight of the day for that little part of the children’s hospital.”
Lisa, who confirmed LaceyLee had been discharged from hospital on April 26, added: “Fingers crossed she’ll make a full recovery. It’s just about retraining the brain to do everything again. She’s been amazing.
“We just want the old LaceyLee 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.”
Money raised by the Noah’s Ark Charity built the theatre suite where Lacey-Lee had her life-saving surgery. It funded equipment on the paediatric critical care unit where she spent time after her operation, and the hydrotherapy pool and sensory room where she underwent her rehabilitation.
Donations were also able to support the physiotherapy team in organising the farewell celebration when Lacey-Lee finally left hospital to go home.
She now undergoes physiotherapy twice a week in Mountain Ash and will soon be phased back into primary school.
The Noah’s Ark Charity will be holding its first 5k Supehero Dash in September to raise funds for the 73,000 children treated at the children’s hospital each year.
For more details visit www. noahsarkcharity. org/ super hero-dash