THE parents of Unbeatable Eva have shared her progress after a difficult couple of weeks.
The 10-yea-old’s symptoms have been up and down, she is suffering from blurred vision, and has some effects following her course of radiotherapy sessions to control the symptoms of her incurable brain tumour called DIPG (Diffuse Intrinsic Pontine Glioma).
Eva’s parents, Paul and Carran Slapa, of Marford, are frustrated due to no treatment to give their daughter a better quality of life being available in the UK.
They have now accessed medication for the Rofft Primary School pupil, at the cost of £7,000 every three months.
This, along with the expensive range of supplements and her keto diet, mean that fundraising is as important as ever.
Eva and her brothers attend Rofft Primary in Marford
Paul said: “As far as treatment options – we remain highly frustrated. There are no options in the UK at all, however when we speak to doctors overseas (who specialise in DIPG), we have been told to use several medications which have shown in clinical research to have anti-tumour effects in DIPG. Many of these medications are available on the NHS but doctors will not prescribe them as they are for ‘other purposes’.”
Eva’s weekly medication
Paul added: “We are talking to two hospitals in the US about trials which we hoped Eva could access post re-irradiation (as unfortunately this excludes her from many trials), but one requires us to have a medical healthcare plan in place, which is proving a challenge, and one has suggested Eva may not be eligible due to reirradiation even though we had hoped that wouldn’t be the case. We are also awaiting results of an assessment in Zurich to see whether there are any options for Eva in their centre, but with so few options available, it is incredibly tough. There is also the CAR T Cell trials in both Seattle and Miami, but the costs of these are extortionate and unfortunately, they are financially beyond our reach at the moment.
“Given we haven’t been able to access a trial, and given time is not something we have, we decided to access ONC201 (the original trial we considered) on an off-label basis. This means Eva takes the medication outside of a trial, however we have seen no negative side effects from this so far, and we hope that this will show some positive results soon. The costs are huge – £7,000 every 3 months, but worth every penny if they help Eva.
“In addition to this, and in addition to starting the keto diet, Eva takes a range of supplements – again all proven to have positive effects on brain tumours.”
Some of the supplements said to help brain tumours
Paul added: “She takes all of these on a daily basis and some of these in high doses – the cost of regularly ordering these supplements is considerable. This week we managed to start on TBL-12 (a natural Sea Cucumber extract) as well, which is something that is helping many children all over the world with DIPG. Again, the costs are huge – the TBL-12 alone is $1,000 per month – and so without the continued support of each person able to donate, we simply wouldn’t be able to give Eva every chance to fight on.
On New Year’s Day, the lives of Paul and Carran Slapa were changed forever when their then nine-year-old daughter Eva was diagnosed with a rare and incurable brain tumour.
Determined to give their daughter hope, the couple launched a campaign to take her to America for treatment that has extended the lives of other children.
The campaign soon reached £250,000, but the coronavirus pandemic has since limited fundraising opportunities.
Eva with her younger brothers
Recently, cans of Unbeatable Lager were sold in Wrexham and Gresford to support the fundraising.
Paul added: “Although it is tough and frustrating at the moment, we will never stop fighting.
“We will continue to try to overcome the obstacles put in front of us, both with accessing and travelling for trials, and with the NHS being unwilling to provide access to medication that may help Eva.
“Please continue to support and donate as we cannot do this without you all, and please keep Eva in your thoughts and hearts.”
Support Eva at https://www.gofundme.com/f/unbeatable-eva