On 1st January 2020, our lives as a family were changed forever – Eva was diagnosed with an inoperable, incurable, brain tumour known as DIPG. This is rare disease which effects a small number of children each year – it is so rare in fact, that in the last 50 years, there has been little progress in being able to identify ways to treat children with the diagnosis.
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, and because it effects the area which controls the major functions of the body, as it grows, there is one terrible outcome.
Our nightmare started in the run up to New Year. Eva had complained of dizziness and blurred vision, and so we organised a trip to the opticians. At her appointment, Eva had 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 our 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 Scan, and our hell began – a ‘mass’ appeared in the image, and we were informed that we would be headed to Alder Hey 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 the following day, and that would tell us exactly what we were dealing with, however that it was almost definitely a mass in the brain stem, which would be inoperable due to its location. We spent New Year’s Eve together – Eva, 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 and we waited on the results. Visits from grandparents and Eva’s two brothers helped pass the time, but we knew bad news was coming and it did…
DIPG – Diffuse Intrinsic Pontine Glioma – is a name I will never ever forget:
* DIPG effects 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 a temporary relief in 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.
As a family, because we have tried to protect Eva from all of 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, and so this is 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, lead by medical teams who fight day and night to try 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, which shows 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 this.
And so, 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 to provide her 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 with this disease.
Thank you so much for your help.
Paul and Carran xx
- Elizabeth Docherty
- Ride For Eva - Anglesey
- Natasha Butt
- Elizabeth Thompson
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