When Steve Ackroyd was diagnosed with epilepsy after suffering seizures, his family thought everything else would just be a tick box exercise.
The television editor, who has worked on shows like Sex Education and Catastrophe, had been having episodes for months.
Discrepancies on the Palmer's Green dad's CT scans were attributed to ‘bad head positioning’, and a private neurologist had diagnosed the cause as epilepsy.
It was only when an MRI scan revealed something wrong that they realised his illness might be far more severe.
“When the technician said there was something ‘very wrong’ and told us to go to our nearest A&E department, it wasn’t at all what we had been expecting,” said Steve’s wife Francesca.
“We always thought these things happened to other people and still can’t believe it’s happening to us now."
Steve had a biopsy last September which revealed a highly aggressive tumour with a devastatingly short prognosis of just 12 to 18 months.
The 47-year-old had 27 rounds of radiotherapy and two courses of chemotherapy before moving onto a second-line chemo.
He had cluster seizures after his radiotherapy, sometimes as many as eight a day.
In January he lost the use of his left leg following a four-hour episode.
“His left side got weaker after each cluster seizure,” Francesca explained. “He could walk unaided until that four-hour one, which really caused him to decline physically.”
The couple, who have an 11-year-old daughter called Autumn, have opted for immunotherapy treatment at the IOZK Centre in Germany.
Fran is on forums and Facebook groups with people from around the world and has found “a lot of things proven to do well” that she says aren’t available in the UK.
What she wants to avoid is the NHS telling her “that’s it, here’s the number for your local hospice".
But it is now clear they will need more than the £123,000 they have raised so far.
They have set up a fundraising page to try to reach the £210,000 they need.
“We are uncomfortable asking people for money,” Francesca stresses. “But everything we get will help us continue fighting this horrid disease.
“We have no money coming in with Steve undergoing treatment and me being his full-time carer. He is terrified of leaving the family in debt.”
They have bills of £700-a-month on supplements and pharmaceutical drugs alone, on top of medical and travel expenses.
Brain tumours kill more children and adults under the age of 40 than any other cancer, the charity points out. Yet just one per cent of the national spend on cancer research has been allocated to this disease since 2002.
Charlie Allsebrook, community development manager for Brain Tumour Research, said: “A historic lack of investment in research has resulted in very limited treatment options for brain tumour patients here in the UK.
"This leaves families like Steve’s feeling they have no option but to fund expensive treatments abroad, adding to their stress and anxiety at what is likely already the most difficult time in their lives. This is an outrageous situation and our hearts go out to them.”
The organisation campaigns for more resources for brain tumour research to speed up new treatments and ultimately to find a cure.
Wellwishers can donate to Francesca’s “go fund me” website page: gofundme.com/f/steve-ackroyds-brain-tumour-treatment.
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