A TEN-year-old whose spirit has captured the heart of people all over the country in her battle with an inoperable brain tumour has seen symptoms 'quickly progress'

Her heartbroken parents, Paul and Carren Slapa say the past few weeks have been "exceptionally tough" and that the tumour on Eva's brain has been described as "very messy".

Almost a year after their daughter Eva Williams was diagnosed with intrinsic pontine glioma (DIPG) on New Year’s Eve, the ten-year-old from Marford is now using a wheelchair and her symptoms have worsened in recent weeks.

Although, with the wheelchair, Eva is still able to get out and about to enjoy time with her family.

Paul shared the update on the Facebook and GoFundMe pages where thousands of people have supported Eva and her family.

He said: "I am sorry it has been a little while since we posted an update, they are often difficult to write, however the past few weeks have been exceptionally tough as unfortunately Eva’s symptoms have quite quickly progressed.

"Some of you may have seen the picture posted over the weekend and will have noticed that Eva is now using a wheelchair. Since we last posted, Eva has lost much of her balance. This is in part related to her worsening vision, but she has lost some of the feeling in her right side, which affects her ability to walk. Having a wheelchair means that we can still get out and about and do things, however in the house, Eva is encouraged to walk and use her muscles as though the feeling is gone, the strength is still there.

"Eva has also been struggling with swallowing which is a common symptom of DIPG – this means we are increasingly careful about the foods she has, avoiding things which require a lot of chewing or which are heavy in texture. Over the past week, her swallowing has actually improved though, and so small ‘wins’ like these are what gives us hope still."

"Last week Eva had an MRI as she had been complaining about headaches and saying her head felt heavy – our concern was that fluid may be present on the brain which is a common side-effect of radiotherapy. Fortunately this came back clear, however the area around the tumour itself was described as ‘very messy’ and so we do not know whether this means the tumour itself has grown, of whether there is swelling which is causing these latest symptoms. We are giving Eva high doses of dexamethasone at the weekends to try to manage this as best we can."

The Leader:

Janine Shurmer on the day of her skydive for her great-niece Eva Williams. Image: Paul Slapa/Facebook

Hampered in getting Eva treatment in 2020 by the coronavirus pandemic, Paul and Carren are still looking at trials that could offer hope to Eva.

Current medication and any future treatment comes at a high cost, meaning the fundraising efforts for Eva, which has seen events take place throughout the year and even the launch of her own limited edition lager, are as important as ever.

So far, more than £310,000 has been raised.

Paul added: "As an update on treatment – we have managed to now source panobinostat, a cancer-treatment drug used in many DIPG trials, privately via an oncologist in Germany, and we are hoping to start Eva on this from Monday next week. She will take this in combination with the existing ONC201 medication we purchase, and we are hopeful that this will help to ease some of the symptoms. The combination was recommended by an oncologist in the DIPG centre of expertise in Zurich, and is a combination which will be used in a clinical trial next year, therefore lab testing and research suggests that this combination will have positive effects. The cost of the new drug is going to be around 10,000 Euros a month, and therefore as always, the fundraising will continue to allow Eva to access the medication.

"We continue to try to identify other promising options, however trials remain few and far between, and many just aren’t showing the success we would hope. The most interesting remains the CAR T Cell trial in Stanford, however as I have mentioned before, at a cost of over $1million this remains out of reach."

Fundraising efforts are ongoing in Wrexham and further afield to support Eva's treatment.

Paul added: "If anyone has any ideas for fundraisers and wishes to support, please contact me or any of the admins on the page – we are open to anything, and every single penny helps.

Thanks, and please continue to keep Eva in your thoughts and hearts. We will stay positive, and we will keep fighting."

Follow Unbeatable Eva on Facebook at https://www.facebook.com/groups/unbeatableeva

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

Current fundraising events for Unbeatable Eva:

  • Christmas prize draw – tickets available at the Fat Boar in Wrexham
  • Sky Dive by Ella Lewis on 19th December
  • Half Marathon by Pav Khosa on 19th December
  • Children’s Dance classes by Paige Coates throughout this term
  • There are collection buckets at the various local advent displays in Marford