Wrexham’s fantastic community spirit has never been in more evidence than with the GoFundMe campaign for Unbeatable Eva. The town has come up with a whole host of fundraising activities. They have also donated generously to make sure the campaign is well on the way to achieving its £250k target.
Eva suffers from a rare brain tumour known as DIPG. The funds will enable Eva to take part in a potentially life-saving clinical trial in the US. Keep an eye open on our social-media channels for related events and news stories.
Eva is a beautiful, kind, and caring little girl. Her last parents’ evening just confirmed what people already knew. Eva is always one to help her friends if she can, putting others needs and feelings before her own. She is special.
Eva has been diagnosed with an inoperable, incurable, brain tumour known as diffuse intrinsic pontine gliomas (DIPG). This is a highly aggressive and difficult-to-treat growth found at the base of the brain. It is a disease which only affects a small number of children each year. It is so rare, that in the last 50 years, there has been little progress in being able to identify ways to treat children with the diagnosis.
Dizziness And Blurred Vision
Eva’s father, Paul, takes up the story: ‘Before that day, we had never heard of DIPG – why would we? It is a tumour which sits in the brain stem, making it impossible to remove. Because it affects the area which controls the primary functions of the body, as it grows, there is only one terrible outcome.
Our nightmare started in the run-up to New Year. Eva had complained of dizziness and blurred vision so we organised a trip to the opticians. At her appointment, Eva seemed to lose some of the control of her eyes and was unable to move them to the right. We were referred to the hospital ophthalmology department and an appointment was scheduled for New Year’s Eve.
Eva had her appointment at the hospital and when a doctor is choking back tears, unable to tell you the problem, you know something is wrong. We were immediately referred for an emergency CT (computer-tomography) scan and our hell began. A ‘mass’ appeared on the image. We were informed that we would be headed to Alder Hey Children’s Hospital that evening. Looking back, even at this point, I don’t think either of us could imagine what was coming.
When we arrived at Alder Hey that evening, we were told that Eva would undertake an MRI (magnetic resonance imaging) scan the following day. That would tell us exactly what we were dealing with. We spent New Year’s Eve together. Eva, my wife Carran and I in a room at Alder Hey watching the fireworks as people celebrated the start of 2020.
On New Year’s Day, Eva completed her MRI scan and we waited for the results. Visits from grandparents and Eva’s two brothers helped pass the time, but we knew bad news was coming.
DIPG – diffuse intrinsic pontine glioma – it’s a name I will never forget.
- DIPG affects children, mainly between the ages of 2 and 12.
- The average life expectancy post-diagnosis is less than 12 months.
- There is no known cure.
- Radiotherapy is the only known treatment, however, it only provides temporary relief to shrinking tumours, that subsequently grow back more aggressively than ever.
The facts of DIPG are things no parent should ever have to face – and they are facts which we couldn’t bring ourselves to share with Eva. She is an incredibly intuitive little girl and so we have been as open as we feel that we can be without sharing the prognosis. Eva accepts this for now.
A Very Private Family
As a family, because we have tried to protect Eva from all the details of her diagnosis, we were very reluctant to start a crowd-funding page. When it comes to our children, you don’t see them all over social media and we are very private about family life. The page was incredibly hard to set up, however, as a parent, you do everything you can to protect your children.
I’ll reiterate that there is no cure – we understand that. That said, there are medical trials taking place all over the world, led by medical teams who are trying to find something to save our children. Unfortunately, many of these trials are unavailable in the UK and many are unavailable in Europe. Because of this, any potential treatment – which may extend Eva’s life – is highly expensive and difficult to access.
We have found a clinical trial in the US which has been proven to have positive effects on the tumours – a drug developed by a company called Oncoceutics and this shows enormous 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 we are unable to access this without help.
Carran and I are putting aside our concerns about sharing this publicly and are instead asking, begging, for help. We are asking for you to donate anything you can – no matter how big or small – to help us to access the best possible treatment for Eva and therefore provide her with the best possible chance of beating this.
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 from this disease.
Thank you so much for your help.
Paul and Carran
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