Family launch campaign to give 'Unbeatable Eva' hope after devastating tumour diagnosis

On New Year's Day, the lives of Paul and Carran Slapa were changed forever when their caring nine-year-old daughter Eva was diagnosed with a rare and incurable brain tumour called DIPG (Diffuse Intrinsic Pontine Glioma).

Determined to give their daughter hope, the Marford couple have launched a campaign to take her to America for treatment that has extended the lives of other children.

Paul said: "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. 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.

Paul and Carran with Eva, Ethan and Finn

The devoted dad said any donations would "help us to access the best possible treatment for Eva, and therefore to provide her the best possible chance of beating this".

He added: "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 added that being able to spend quality time with Eva was priceless to the couple and Eva's younger brothers Ethan, six, and Finn, four.

Children are eligible for the trial 12 weeks after completing radiotherapy. And with Evan just coming to the end of the fourth week of therapy, the family are faced with a real race against time.

The gofundme campaign to raise the £250,000 was launched on Friday and has already raised more than £42,000.

Paul added: "We have been so overwhelmed with the support people have given us, it's been absolutely incredible.

Eva

Describing his daughter, a pupil at Rofft Primary School, Paul said: "Eva is a beautiful, kind, and caring little girl who has a heart as big as anyone. Her last parents evening confirmed what we knew already – Eva is always one to help her friends if she can, putting others needs and feelings before her own.

"She is special."

He then told the Leader how the family's lives began to be turned upside down in the final days of 2019.

"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," he said.

Eva on World Book Day

He added: "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.

"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.

"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."

Eva

Diffuse Intrinsic Pontine Glioma effects children, mainly between the ages of two and 12, and the average life expectancy post-diagnosis is less than 12 months

There is no known cure and radiotherapy is the only treatment available in the UK, however it only provides a temporary relief in shrinking tumours.

On starting the crowdfunding campaign, Paul added: "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."

For more information on the campaign or to make a donation visit https://www.gofundme.com/f/unbeatable-eva