Brave little girl battling incurable brain tumour
WHEN nine-year-old Eva Williams started complaining of blurred vision and dizziness, her parents thought she might need glasses.
But after being assessed by an optician who referred her for further tests in hospital, she was found to have an inoperable, incurable brain tumour.
While everyone else was celebrating the start of 2020, Eva’s heartbroken family were sat on a ward on New Year’s Day wondering how much time they had left with her.
“Eva is a beautiful, kind, and caring little girl who has a heart as big as anyone,” said her dad Paul Slapa.
“She is always one to help her friends if she can, putting the needs and feelings of others before her own. She is special.”
During her appointment at Specsavers, Eva was unable to move her eyes to the right during the “follow my finger” test.
It prompted the optician to refer her to the ophthalmology department at Wrexham Maelor Hospital for an appointment on New Year’s Eve.
“When a doctor in the hospital is choking back tears, unable to tell you the problem, you know something is wrong,” said Paul. “We were immediately referred for an emergency CT scan – and our hell began.”
The CT scan revealed a “mass” on Eva’s brain which would need further examination by specialists at Alder Hey Children’s Hospital in Liverpool.
“We were informed that we would be headed to Alder Hey that evening,” recalled Paul.
“Looking back, even at this point I don’t think we could have imagined what was coming.”
Following an MRI scan on New Year’s Day, it was discovered that Eva had diffuse intrinsic pontine glioma (DIPG), a highly aggressive brain tumor.
As the mass is located in the brain stem, which is responsible for controlling basic body functions such as breathing, swallowing, heart rate and blood pressure, doctors claim it is too dangerous to remove through surgery.
The average life expectancy postdiagnosis for children with this condition is less than 12 months.
“We were just in shock. We knew deep down that something was wrong but we were totally unprepared for the severity,” said Paul, from Marford, Wrexham.
“That whole 24 hours of being in Liverpool is just a complete blur.”
Two weeks after the diagnosis, Eva started the first of 13 sessions of radiotherapy at the Clatterbridge Cancer Centre, Birkenhead, in a bid to shrink the tumour.
“Watching her going through radiotherapy was heartbreaking. It’s a horrible process,” Paul added.
“She has to wear a mask specially created for her to target the exact area where the tumour is. She’s fixed to the bed and cannot move, which is deeply upsetting to see.
“But after a while you almost become used to it. Eva has been so strong and just gets on with it.”
Paul added that Eva’s strong steroids have come with terrible sideeffects, including pains in her chest, head and stomach.
“She’s been unable to control her emotions and the weight gain has been hard for her to take as a nineyear-old. It gets her down,” he said.
“But two weeks ago she came off those steroids on to something else and the change in her has been incredible.
“We feel like we have our old Eva back. She’s our beautiful, playful little girl who loves bouncing around and making silly noises again.”
The only option for Eva – who has two younger brothers called Ethan, six, and Finn, four – and her family is to look into innovative medical trials, most of which are not available in the UK.
“We have found a clinical trial in the US which has been proven to have positive effects on these tumours,” added Paul, who said that chemotherapy is ineffective for his daughter’s condition.
“A drug developed by a company called Oncoceutics is showing huge promise in targeting DIPG.
“After conversations with our consultant, we are aiming to get Eva on the trial. However, the cost starts at £250,000 and so without help we are unable to access it.
“Any funds raised will be used to provide Eva with medical care, access to medicine and any possible clinical trials.
“If we find ourselves in a position where we do not require the funds raised, we will be donating to DIPG charities and to children suffering with this disease.”
Paul and Eva’s mum Carran Williams have now set up a GoFundMe page in an attempt to raise the £250,000 needed.
“Carran and I are putting aside our concerns about sharing this publicly and are instead asking, begging, for help,” said Paul.
“No parent should have to raise £250,000 for medicine to save their child’s life.”