THE parents of a little girl battling an incurable illness say fundraising to access lifeline treatment for her is more vital than ever.

The coronavirus pandemic halted plans for Eva Williams, of Marford, to access a place on a pioneering treatment trial in the USA.

But, with four avenues for treatment open in America and now perhaps Europe, the nine-year-old's parents, Paul and Carran Slapa, have not given up hope.

They Eva will be accepted for treatment, which will cost hundreds of thousands of pounds, in the near future.

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Eva during a craft and well-being session

Paul said: "We are still playing a waiting game with the trials. We have been in contact with a family in Miami who are trying to help us access the trial there – in order to do that we would need Eva to undergo a biopsy in the UK first, which she isn’t too keen on. We are also in contact with Cincinnati Children’s Hospital who have requested all of her medical records to enable them to assess her eligibility. Boston have now confirmed to us that they are not open for paediatric trials, and New York also remains closed for international patients – they were offering an expanded access programme for children showing tumour progression, but that is now being closed by the pharmaceutical company.

"What this all essentially means is that the trials aren’t readily accessible and we feel as though time is probably running out on us accessing the ONC201 trial. Hopefully one of the two (Miami/Cincinnati) allows us access in the near future, and we will keep everyone posted.

"We are also continuing to keep in contact on other trials – the Stanford CAR T-Cell trial opens this month and they will be admitting their first patient in to that. At the moment, due to care required around it (which includes a month long inpatient stay) they are not open to international patients, however having talked to the lead doctor there this week, they are hoping that they will be able to open the trial up to us assuming they have success. This trial is likely to be one of the most expensive – more so than the ONC201 trial – and so the need to continue fundraising is greater than ever.

"Also this morning we have spoken to a leading specialist in DIPG who is opening a centre of excellence in Zurich as part of the Zurich University Children’s Hospital. They are aiming to get an Oncoceutics trial using ONC206 (similar to ONC201) launched in the next couple of months which would give us the chance to access a trial in Europe. This is amazing news for us, but we desperately need positive news when Eva has her next scan.

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Life in lockdown has been hard for the nine-year-old

Eva was diagnosed with an incurable high-grade diffuse intrinsic pontine glioma (DIPG) at the start of 2020 and has undergone an intensive and gruelling course of radiotherapy.

Her parents launched a fundraising campaign to send the Rofft Primary School pupil to America for pioneering treatment to extend her quality of life.

Despite the coronavirus pandemic hampering local fundraising efforts, the initial target of £250,000 was reached and exceeded in a matter of weeks.

But the reality is that the cost of treatment will be much higher.

Paul added that life in lockdown has been particularly challenging for Eva and her family.

He added: "As it is for everyone, lockdown has been pretty tough – mainly keeping the kids all entertained and avoiding them being glued to an iPad or TV – but also, especially over the past couple of weeks, Eva has been struggling with sickness and pain again. She is due her next MRI at the beginning of July, so we are obviously hoping and praying for good news, but honestly, it is hard sometimes to remain positive and not think the worst.

"Eva also struggles a lot with her anxiety levels, and she has found it really difficult to bring herself down when she is worked up over something. This can lead to her becoming physically sick and so we have even had a couple of hospital trips since the last post – and they even did a CT Scan to check that there was no progression, which thankfully there wasn’t. As a parent, it is hard to deal with those situations because there is an element of having to try to be firm and help Eva to understand that its things she is thinking about which are upsetting her, and not anything “real”.

However, Paul says the family have been boosted by meeting two long-term survivors of Eva's condition.

He says they have given the family to keep pushing for treatment for Eva, making the fundraising for the campaign, of which their have been so many examples of locally and further afield, is more vital than ever.

Paul said: "Along this whole journey, it is hard to be positive, but in the past week or so, we have spoken to two long term survivors of DIPG. Considering parents are told “there is no cure” and that “there are no survivors”, these amazing cases give huge hope. We have talked to both girls who are 10 and 20 years post-diagnosis, and they have told us about their own journey and treatment. This allows us to discuss other potential drugs and treatments with our Oncologist, which we will be doing next week.

"As always, for now, we need to keep Eva’s story out there. We need media coverage, we need sharing on social media, we need people to talk about it as much as possible. Without that, we cannot achieve the massive fund raising goal we have, and we cannot access the treatment she needs. So I am begging again for all of you incredible supporters to keep pushing for us – if you can share the story again, it keeps it fresh in everyone’s mind, and helps us more than we can put in to words.

Paul concluded by thanking those who have supported Eva during her illness.

He added: "Eva has amazing support from lots of people, but she does weekly work with a Northwich charity called Joshua Tree. They are brilliant with her and have helped her to connect with other children who have the same diagnosis, or who are unwell, and we wanted people to see her smiling and happy."

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