South Gloucestershire family in huge fundraising challenge to save terminally ill dad
Rob Tillen from Thornbury who's 53, was given months to live last summer after being diagnosed with a brain tumour
Last updated 12th Jan 2022
A South Gloucestershire family trying to raise 350-thousand pounds for medical treatment says they have a mountain to climb.
Rob Tillen, a 53-year-old dad from Thornbury, has been told he only has months to live after being diagnosed with a brain tumour last summer, but his partner wants to try an experimental treatment only available in Germany.
Rob's illness was first spotted in August 2021 by a high street optician who sent him to A&E at Southmead Hospital.
Eleven days later on August 23 he had a craniotomy during which his surgeon managed to remove at least 98% of the tumour, but Rob and his partner Annabel later found out it was a grade 4 glioblastoma multiforme (GBM), meaning it is very likely to grow back.
Rob’s fiancée, Annabel Jarvis said: “Rob was out running one day in June, when suddenly he felt like his vision had ‘shifted’ to one side.
"He said it looked as though everything was ‘lop-sided’.
"By the end of July, his vision was getting worse and one day in August, he had his first ever migraine, which lasted a whole day.
"On 11 August, he went for an eye test at Specsavers in Thornbury, to try to get to the bottom of his symptoms.”
It wasn't long into the appointment that the optician spotted something suspect and sent Rob to the hospital.
“COVID-19 restrictions meant that Rob had to go in to hospital alone," Annabel said.
"He was there for several hours and at around 1am the next day, he called asking me to go to Southmead.
"When I arrived, Rob took me into a bay and told me they’d found a brain tumour. I was totally blind-sided."
Rob was told he had 15 months to live and is due to marry Annabel this summer, who is now fundraising for overseas treatment.
“I’m looking into targeted peptide vaccines, available at a clinic in Germany, called CeGat," she said.
"The treatment is personalised and would aim to encourage Rob’s immune system to attack the tumour. But it comes at a huge cost.
"We need to raise £350,000."
Annabel was herself diagnosed with multiple sclerosis (MS) during the first lockdown, but has set herself the challenge of walking 500 miles over six weeks till the end of January, to raise money.
Brain tumours kill more children and adults under the age of 40 than any other cancer yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
If you want to donate to Annabel's campaign you can do so here.
Rob, a former music producer, had a top 40 hit in the UK charts with the group The Purple Kings in 1994.
Mel Tiley, community development manager for Brain Tumour Research, said: “We are so sorry to learn of Rob’s diagnosis with a GBM and send him our very best wishes for his ongoing treatment.
"The fact that Annabel is having to explore expensive private treatment options overseas is just not good enough.
"We, as a charity, are campaigning for more funding into brain tumour research to help find better treatments, which can be made available on the NHS.
"Ultimately, our mission is to find a cure for brain tumours to help prevent more families from being torn apart by this awful disease.”