It’s Ollie’s last chance. But how can his desperate parents raise the £440k that might save his life?
WHAT price can you put on a child’s life? It’s a question Peter and Jane Gardiner have recently had to contemplate. For unless they raise a six-figure sum, their 12-year-old son Ollie’s outlook seems heartbreakingly poor.
Ollie has cancer in his brain and spine. Facing up to what may happen is almost too painful for Peter, Jane and Ollie’s brother theo, ten, even to consider.
his family can’t believe that a boy who, until recently, was so full of life — he’s a keen Scout who is popular at school and dreams of being a tailor when he grows up — could be so ill.
Ollie was diagnosed with a brain tumour in april last year after months of excruciating headaches. he had a ten-hour operation to remove the golf ball-sized tumour from his brain, which left him unable to walk or talk — but he fought back, re-learning to do both while having chemotherapy.
In September last year, the family breathed a sigh of relief when doctors said there were no visible signs of the cancer left.
‘We opened champagne, we booked a holiday — we thought the worst was behind us,’ says Peter.
But last month, Ollie had a check-up and, the next day, Jane, 47, an accountant, was called by the doctor with devastating news. ‘there were signs that the cancer had come back,’ she recalls, in a quiet voice.
When she called Peter, he ‘screamed the house down,’ he says. ‘I knew how bad it was. Once cancer returns, it becomes harder to treat.’ the cancer was now in Ollie’s spine, too, and doctors could only offer chemotherapy to try to give him some extra time.
‘When the oncologist said “I don’t think we can cure this one”, it was like being kicked hard in the stomach,’ says Peter, 48, a broadcast engineer.
‘You don’t realise how much words can feel like a physical assault until you go through something like this. the oncologist said he’d had patients live up to seven months with chemotherapy and that time might help us find a trial for Ollie to join.
‘We went back and told Ollie. I put him to bed that night and he said: “Daddy, what happens if we don’t find a trial?”
‘I said: “Don’t worry, mate, of course we’ll find one.” But inside, I was screaming: “What does happen if we can’t find one?” ’
In desperation, Peter took to the internet to find hope for his son. and he believes he has found it. It is not a clinical trial, but a multi-drug treatment called MEMMat that has been tried on a handful of children.
THE potentially life-saving therapy involves treatment at a harley Street clinic for a two-year daily regimen involving eight drugs including thalidomide, chemotherapy and biological drugs that help the body control the growth of cancer cells.
But the drugs and clinic will cost around £440,000 — plus the cost of travel from the family’s home in aston Clinton, Buckinghamshire, to London, and the fact that Peter must work part-time, so he can accompany Ollie for daily treatment. ‘I don’t care what it takes,’ says Peter. ‘all we crave is for us to be a whole healthy family again.’
after selling their car and Peter’s motorbike, the couple have put their hopes of raising the rest of the money in so-called ‘crowdfunding’: essentially, asking strangers to donate money.
Whereas those in their position might once have held raffles or coffee mornings, now they turn to crowdfunding websites such as JustGiving.com or GoFundMe.com, which allow you to start a personal appeal for money (the sites take a cut, normally of around 5 per cent).
It is becoming a familiar scenario. Former Emmerdale actress Leah Bracknell, 52, who has been diagnosed with inoperable lung cancer, has a GoFundMe page where she has, so far, been given more than £60,000 by strangers to fund a form of immunotherapy treatment — where the body’s own immune system is used to try to kill cancer — in Germany that is not available to her in the UK.
In the past four years, around 5,000 personal health campaigns have featured on GoFundMe alone, raising £15 million. the site was launched in the U.S. in May 2010 as a place where people could ask for funding for any personal cause, from university fees to funeral costs. ‘But health causes are becoming the most popular,’ says Kelsea Little, the site’s media director.
Many cases involve raising funds for cancer treatment. One of the website’s biggest success stories is Mike Brandon, 31, from Bristol, whose wife Kate, 33, set up a fund earlier this year to pay for his treatment for leukaemia in the U.S. It raised £450,000 within days, enough for his treatment and a donation to the hospital. tests suggest Mike is now cancer-free.
But why are people having to ask for funding in the first place?
‘When people ask for donations for treatment, it’s often because NhS approval for funding for that therapy is not yet in place,’ says Professor David Walker, a paediatric oncologist based at the University of Nottingham. ‘they cannot get it on the NhS, as that only happens once its effects are proven — and once NICE [the National Institute for health and Care Excellence] has approved its funding on the NhS, which can take three years.’
another option is to get on a drug trial, where the treatment is funded by the pharmaceutical company. But the patient may not fit the criteria, or the study may already have its quota of participants.
Certain conditions may feature more often on crowdfunding sites, as they are less common and there are fewer treatment options.
the harder the condition is to treat, the more likely people are to seek out new, often expensive, treatments, even if the evidence for them is limited.
Patients’ willingness to try anything, at any cost, is something andrew Goldberg, a consultant orthopaedic surgeon at the Royal National Orthopaedic hospital, in Stanmore, has seen a lot.
‘I had a patient recently who had paid more than £22,000 for stem cell treatment on the Continent for their arthritis — they said it helped, but only for a few days,’ he says.
‘there is also the potential for people to fall for the offer of what is essentially snake oil.’
the charity Cancer Research UK echoes this view. as Emlyn Samuel, a senior policy manager, told Good health: ‘It would be concerning if more patients were having to find ways of getting treatments outside the NhS or seeking ways to fund treatments that do not have a recognised evidence base.’
Yet, given its dire financial straits, even the NhS is getting in on the crowdfunding act.
Mr Goldberg has helped to set up makeitpossible.org.uk, the first crowdfunding website for an NhS hospital. the initial aim is to build a £400,000 extension to its spinal injury unit.
‘the hospital is being rebuilt by the NhS at a cost of £100million, but there isn’t the money to extend our unit,’ says Mr Goldberg.
‘the difference between this and giving to charity is that you know exactly what you are donating to.’
Mr Goldberg expects all the major hospitals to follow suit soon.
AS FOR Peter and Jane, it was sheer desperation that made them turn to crowdfunding. Peter pleaded for doctors to find a UK trial for Ollie, but there were none suitable.
‘We suddenly felt very, very alone,’ he says.
Peter found a trial for an immunotherapy treatment in the U.S. that had showed promising results with recurrent brain tumours, but it was at an early stage. ‘they wanted £137,000 before they would look at him,’ says Peter.
then, Peter found out about MEMMAT, a multi-drug approach for relapsed brain tumours of the type Ollie has. It involves bi-weekly treatment with bevacizumab, a drug given intravenously, which targets a protein that helps tumours grow. Patients are also given oral chemotherapy drugs, as well as chemo administered via an ommaya, a small rubber ball that goes under the scalp to deliver drugs directly into the brain.
‘MEMMAT has had pretty good results,’ says Peter. ‘Of 17 children who have had the treatment, seven are in full remission. that’s not bad for an incurable disease.’
Crowdfunding is working for the family — in under three weeks, they have raised more than £100,000.
Finding out how much money was needed for Ollie’s treatment was like another kick in the stomach, because it was so much.
‘But it is incredible how generous people have been,’ says Peter. ‘a lot of this money has come from people who have never met us.
‘But we are still worried that the full sum won’t be raised. Somehow we have to find that money.’
Last week, Ollie had the ommaya fitted and it’s hoped full treatment can begin soon. But, rather than wait, the couple are borrowing money against their house to give the clinic the £75,000 deposit it needs to get started, as they can’t yet access the crowdfunded kitty.
‘When the american hospital asked for money and I didn’t have it, I felt so powerless,’ says Peter. ‘When it’s just money standing between your son’s life and death, it’s a horrible feeling.’
justgiving.com/crowdfunding/ peteandjane-gardiner