The family of a 10-year-old girl fighting an inoperable brain tumour have told how the pandemic has robbed them of precious memories with their daughter.

But they say the generosity of donations are helping to prolong her life.

Paul Slapa and Carran Williams were given the devastating news on New Years Eve that their daughter, Eva, had diffuse intrinsic pontine glioma (DIPG).

The tumour sits in the brain stem, making it impossible to remove.

The rare and aggressive disease only affects a small number of children each year, and as a result, little progress has been made to identify ways to treat children with the diagnosis.

The family, from Marford, Wrexham, were told the best thing to do was to go and make memories as a family.

But as the pandemic struck, not only were plans for family holidays and special days out restricted - clinical trials in the US were also put on hold.

Once they eventually reopened in July, the trials only began accepting US patients because of travel restrictions.

Evas dad, Paul, who works in finance, said: The diagnosis was hard enough.

But to then miss out on treatment and to be able to go places together and go on holiday is tough.

Youre just waiting around, and now that shes in a position where things are more difficult for her, we cant do these things anyway because shes unable to.

Were lucky to live in a rural area, but its not quite the same as doing the fun stuff.

Its those things that have been affected from a memories perspective.

Weve just missed out on this period of time, and that has been tough.

He told how Evas last scan in October revealed the tumour has progressed, meaning the ability to move her face and her balance has become worse.

There are no more treatment options in the UK - shes had her last radiotherapy in August which was just to stabilise things, Paul said.

Thats all finished now.

As a result, the family is desperate to continue raising money that will help fund private medication that is hoped will prolong Evas life until medication with a known positive effect becomes available.

After starting a fundraising campaign at the beginning of the year, they hit their initial 250,000 target.

But with ever-growing private medical costs and with the hope of finding more effective treatment, the target has now been increased to 500,000.

The worst scenario is that we get access to something, but then we cant afford to do it, Paul said.

Not having the money shouldnt be an issue - so thats why we carry on.

They are currently paying 12,000 every 12 weeks for a private German medication, which Eva has been taking since June.

They are also trying to access further medication in the hope of prolonging their daughters life at a cost of around 10,000 a month.

Its all cost that adds up because the NHS will not allow us to have them over here, which is frustrating, Paul added.

If we were to continue with the treatment over the next 12 months, were talking 160,000 euros - and that doesnt include European hospital care.

It means weve got to keep fundraising because those amounts of money are just astronomical.

Paul said they dont know if the medication is having a positive effect on Eva, but say they will continue with the treatment in the hope that it is.

The reality is there is no cure for DIPG, so life extension is your goal, he said.

We hope during that time as trials launch that something does prove to have an effect.

We have to act now because we dont know what the future holds.

Paul added: The NHS is brilliant in terms of free access to healthcare and thats fantastic - but where it doesnt work as well is when you have to pay thousands of pounds to access a drug because the NHS wont prescribe it because its not part of a trial.

My attitude is that if its potentially going to help a child whos ill to the point where they don't necessarily have that amount of time, then you should try these things.

Weve been really lucky that lots of people have supported us, but I know of other families who havent had that same success.

How is it fair that they then just dont get access to treatment?

It doesnt make sense to restrict a child from having a chance - its wrong.

But since the pandemic, Paul told how it has become very difficult to raise money with coronavirus restrictions in place.

We had all these ideas in the pipeline to hold events, but even thats been difficult because of the restrictions, so weve had to find different ways to do it.

Theres only so many times you can ask people to keep giving.

Locally so many incredible people have donated already, but how many times can you ask that same person to put their hand in their pocket for us?

Thats why Children in Need was fantastic because it raised awareness of Evas situation nationally.

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He added: You have to try to remain focused on making things happen and moving forward, otherwise it all consumes you.

You dont think about the future, you just have to deal with the here and now.

A lot of people tell us were so strong, but what is the alternative? We cant be anything else because it doesnt help Eva.

In a bid to further raise the profile of Evas case, the family appeared on BBC's Children in Need last week, which highlighted Evas journey so far.

In an emotional video played to the nation, her parents told how she had lost the ability to smile which they said has been pretty tough.

Up until recently, shes coped well with the physical side of things, Paul said.

A lot of the frustration for Eva is the psychological side of it.

She sees the appearance change and it sparked a reaction after watching the Children in Need video.

There were pictures and videos running on the beach and pictures of her when she was younger smiling, and its that which knocked her.

She turned to Carran and said she wanted to be normal again.

Its that bit that really gets to you, because theres nothing you can do to help her.

See more here:
Family fight to make more memories with daughter after pandemic robs them of precious time - North Wales Live

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