Hopes high that Eva Williams will start lifeline treatment in eight weeks as she approaches 10th birthday

Eva Williams, of Marford, 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, Paul and Carran, 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.

The family are still pinning their hopes on getting Eva on a medical trial in the USA, initially at New York University Langone Health, but now due to travel restrictions and a halt to treatment they are considering other options with the hope of the lifeline treatment starting in the next two months.

Eva has had a tough time during lockdown but is staying in touch with friends online. Image: Paul Slapa/Gofundme

Eva's dad, Paul Slapa said: "With regards the trial, we remain in a waiting game. The trial in New York is definitely closed, though they are meeting next week to review, however there are also trials for the same medication in other areas of the US, such as Boston and Philadelphia, and we are in contact with hospitals there to see whether they have space for Eva.

"We spoke today with our oncologist at Alder Hey and he again re-enforced that the ONC201 trial is something to pursue, however we also discussed a number of other trials which we have been researching. There is a trial in Stanford Medical Centre, California, which uses a new type of therapy called CAR T-Cell, and this is something that many medical professionals who are researching this horrendous disease consider to be a potential game changer. The trial doesn’t launch until June, however they are not initially taking international patients, and so we will keep our eyes on this.

"For now, our goal is to be on the ONC201 trial within the next eight to 10 weeks, travel permitting.

Paul added that the impact of conronavirus, and having to look at new options, means that fundraising to increase the current total of £270,000 is more vital than ever.

He added: "The downside to the new trial is that the costs remain huge – they are in fact bigger than the ONC201 trial – and so the need to raise funds continues and is more important than ever. ONC201 can buy us time for Eva, but when a new treatment which may be life-saving arrives, we need to be able to move quickly and access that!

"So we are appealing to you all to please please please keep raising funding – whatever you can donate is a huge help, and as soon as the circumstances allow for it, we will aim to start running fundraising events which we had planned. As a local community, you have done so much for us already that we will be forever grateful, and if you can continue to help us in any way, we will always be indebted to you."

The last few weeks in lockdown have been difficult for Eva and her family.

Eva Williams is becoming stronger. Image: Paul Slapa/Gofundme

On a positive note she is beginning to become her old self and get physically stronger now the radiotherapy is behind her, but it has been a real struggle.

Paul, in a message to people who have supported Eva's fundraising campaign, said: "The past few weeks have been tough – for at least three weeks now, Eva has had nausea and has been struggling with eating. We all know how unpleasant it is to feel sick, so to have this constantly has been a real struggle for her. She has anti-sickness medicine which was helping for a while but this no longer seems to work for her.

"About a week and a half ago, we were referred to Wrexham Maelor by our oncologist to check Eva’s general health, and she was given a CT Scan to check the status of the tumour – fortunately this showed no progression from the last MRI.

"As well as the sickness and nausea, Eva has really struggled with anxiety. She gets very anxious at any separation from Carran in particular, and especially at night, and this can lead to quite a lot of stress in the house, especially when we are all stuck inside!

"On a more positive note though, Eva is doing much better physically. She continues to improve her mobility, and the effects of the steroids keep reducing. The most significant side effect from her radiotherapy, and specifically the harsh steroids she was on, was the weight gain and physical changes she went through. These changes knocked Eva’s confidence as although she is as beautiful as ever, for a little girl approaching her 10th birthday, physical changes are the things that she is very much aware of."

Eva and Paul

Although she and her friends are not attending school, Eva has been able to stay in contact online, which Paul says has given an amazing boost to her confidence and sense of well-being.

Mr Salpa said: "These changes also meant that pre-lockdown, Eva really struggled with just the thought of going to school, however she has been on facetime and video calls with her friends over the past few weeks, and this has been brilliant for her confidence. There are a couple of photos below which show the difference in her over the past six weeks – it is amazing how much she is becoming herself again, and makes our hearts melt.

Eva undergoing radiotherapy

He ended his message to supporters by praising the community spirit and generosity shown to his family.

"Lastly, we want to send a message to all of you to say that we hope you are all staying safe and healthy," he said.

"This is the strangest of times, and the community spirit we have seen on our daily exercise is greater than ever – both Carran and I grew up locally, and the way people in the area have shown how much they care is humbling to us, and we hope that in the future we will somehow be able to pay you all back for your kindness."

Support Eva at https://www.gofundme.com/f/unbeatable-eva