Heartbroken father whose daughter, 10, is battling rare tumour tells of his bitterness that Covid has robbed him of the chance to seek life-changing treatment abroad for her cancer
- Eva Slapa, 10, was diagnosed with a rare DIPG tumour on New Year’s Day 2020
- The average life expectancy for this type of cancer is less than 12 months
- Efforts to fundraise for treatment and join medical trials were thwarted by Covid
- The Wrexham family say they are watching their child deteriorate day by day
A father has told of his bitterness at the Covid pandemic for robbing him of a chance to seek treatment abroad for his daughter after she was diagnosed with a rare form of cancer.
Paul Slapa fears that his daughter Eva will become another victim of the Covid crisis – despite never having caught the virus.
The 10-year-old was diagnosed with a diffuse intrinsic pontine glioma (DIPG) tumour on New Year’s Day 2020.
Parents Paul and Carran, both 35, were told their daughter had less than 12 months to live.
Since then the DIPG tumour growing on her brain stem has slowly taking away bits of their daughter’s personality piece by piece.
Parents Paul and Carran, both 35, were told their daughter Eva, now 10, had less than 12 months to live after she was disgnosed with a diffuse intrinsic pontine glioma (DIPG) tumour on New Year’s Day 2020
Paul Slapa, 35, has told how difficult it has been to watch his daughter Eva, now 10, deteriorate, but this has been made even harder by the family’s inability to seek treatment or fundraise due to the Covid pandemic
But for her father Paul the hardest thing about their daughter’s disease is that they have been unable to do anything to help prevent the inevitable.
The global coronavirus pandemic put a stop to the experimental medical trials that could potentially have helped Eva, while fundraising efforts to help secure her treatment were also thwarted.
It has also made the family’s ability to make memories in the final months of Eva’s life much more difficult.
‘We’ve struggled to do anything – flying overseas, accessing trials and medication,’ he said.
‘It’s already difficult but it has been made more difficult by all the restrictions in place.
‘You also spend time trying to do things as a family as best you can which has also been affected by Covid.
‘Any of the trials we chose are all experimental treatment, so we will never know whether or not they would have been successful or not.
‘But the fact is the chance and opportunity to try was taken away by Covid.
The global coronavirus pandemic also made the family’s ability to make memories in the final months of Eva’s life much more difficult
Covid also put a stop to the experimental medical trials that could potentially have helped Eva, while fundraising efforts to help secure her treatment were also thwarted
‘That’s the thing that really makes you feel like you have been wronged.’
The key trial the family were hoping to enroll Eva on stopped taking on patients when Covid spread around the globe.
By the time the trial – run by a company called Oncoceutics – was welcoming patients again over the summer, Eva’s DIPG was too far progressed for her to be accepted.
‘We lost six months because of not being able to access the treatment due to Covid,’ said Paul.
‘I try not to sound too bitter, but its frustrating. There has been a lot of talk about how Covid has impacted diagnosis of childhood cancers.
‘It has stopped not just us, but so many people accessing treatment.’
But one of the hardest things for dad Paul to come to terms with, it the realisation that all that is standing between him and a cure for his daughter’s cancer is money.
It adds to his frustration that he has been unable to fundraise during the pandemic.
The family, from Wrexham, Wales, fear Eva will inadvertantly become another victim of the Covid pandemic – despite not contracting the virus itself – as the virus prevented her from joining experimental trials that could have prolonged her life
‘It’s putting a price on human life,’ says Paul. ‘And in thise case the price on children with DIPG is £8 million per year.
‘That is the amount the Department for Health and Social Care is putting into research each year. And thats wrong in my opinion because Eva is 10.
‘These are children who have been robbed of a chance at life. All cancers are bad, amd then you have DIPG which affects children and has a a prognosis of less than 12 months. Its the worst of the worst. And it’s all down to money.
‘To turn around a Covid vaccine in such a short period of time really hammers home the point that in all of this helping out people who are ill – whether children or adults, cancer or otherwise – it all comes down to investment and money.
‘I’m not suggesting for one second the focus should not be on Covid, but as a parent you certainly feel that – you cant help it.
‘You feel the world focus is on one thing and everything else is left, and in our case the thing that is left is something we dont have the time to wait out.’
Paul has said the progressive cancer has robbed him of his 10-year-old daughter piece by piece
The happy child who loved playing with her two younger brothers Ethan, six, and Finn, aged four, (pictured) was replaced by a frustrated child with a ‘whole personality change’
‘It’s her personality for my wife and I that’s difficult,’ Paul said, when recounting both the physical and emotional changes in Eva
The rare cancer that robs children of their lives within 12 months: What is a diffuse intrinsic pontine glioma?
A diffuse intrinsic pontine glioma (DIPG) is the second most common type of high-grade brain tumour to affect children.
The cancers begin in a part of the brain stem called the pons, which is responsible for vital functions such as breathing, sleeping and blood pressure.
Because the tumours grow in such a sensitive and important area of the brain it is too dangerous to operate on them, so they are considered incurable.
Most diagnoses occur in children between the ages of five and 10.
The cause of the tumour remains unknown, but more than 90 per cent of patients are thought to die within 18 months of diagnosis.
Each year, there are around 100 to 150 new diagnoses in the US and between 20 and 30 in the UK.
Symptoms include lack of facial control, double vision, headaches, vomiting, weakness, seizures and balance problems.
One of the early indicators of the cancer is a child falling, tripping or losing balance.
Source: The Brain Tumour Charity
Paul and Carran, both 35, were first alerted to the fact something was wrong with their daughter a year ago when she complained of double vision.
After an eye test before Christmas 2019 the family were sent from their home in Marford, Wrexham to Alder Hey Children’s Hospital near Liverpool.
They spent New Years Eve watching the fireworks at midnight from their hospital bed while waiting for the results of an MRI that would change their lives.
The parents were told on January 1 that Eva had a diffuse intrinsic pontine glioma (DIPG) tumour.
There is currently no known cure for DIPG, which on average occurs in children aged between two and 12-years-old.
DIPG tumours are often difficult to remove as they grow in the brain stem – an area that controls vital bodily functions like breathing – and the average life expectancy for someone with DIPG is between nine and 11 months.
The daughter of Neil Armstrong, the first person to walk on the Moon, also famously died of DIPG in 1962. She was only two-years-old.
Since Eva’s diagnosis, Paul has said the progressive cancer has robbed him of his 10-year-old daughter piece by piece.
The happy child who loved singing, Tik Tok dances and playing with her two younger brothers Ethan, six, and Finn, aged four, was replaced by a frustrated child with a ‘whole personality change’.
The steroids she is on as part of her treatment leave her with anger akin to ‘roid rage’, says Paul, who worked in financial services, and severe anxiety.
‘You go from having a carefree child who enjoys doing things, is funny, bubbly and caring to this angry and anxious and stressed individual who is depressed and doesn’t want to do things,’ said Paul.
‘It’s her personality for my wife and I that’s the most difficult.’
Eva also has a lot of physical changes as a result of her cancer.
After the disappointment of missing the clinical trials in the US due to Covid, the family are now speaking to doctors in Zurich who is running trials on treatment for DIPG in the New Year. Pictured: (right) Eva as a younger child, (right) the physical effects of the tumour
Her eyes have turned inwards – one of the effects of the tumour on her brain stem – and she also suffers from facial palsey which has left her unable to smile or laugh.
She has also lost feeling in her right leg, which affects the shape of her body, and she can no longer feel anything in her right hand.
After the disappointment of missing the clinical trials in the US due to Covid, the family are now speaking to doctors in Zurich who is running trials on treatment for DIPG in the New Year.
They hope to privately source the drugs used on the trial for Eva to take at home and the results will be fed back to the Swiss doctors through her oncologists in the UK.
The family are fundraising through their GoFundMe page to help fund Eva’s treatment.
- You can visit their ‘Unbeatable Eva’ fundraising page by clicking here.
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