ASHYA’S MIRACLE
He’s the boy whose parents were jailed for abducting him from a hospital which refused to give him the pioneering brain tumour treatment he then had abroad. Today, three years on, the Mail can reveal doctors say he’s cancer-free
WHEN Brett King read the letter from a leading child cancer specialist after his eight-year-old son Ashya’s most recent brain scan, he sobbed like a baby.
‘Dear Mr King, it was good to talk to you yesterday,’ it began. ‘As we discussed, I have reviewed Ashya’s MRI scans with our radiologists. I am pleased to say there is no sign of any tumour recurrences and there is nothing that requires any urgent interventions.’
The letter ended with associate professor and consultant in paediatric oncology Dr Juliet Gray’s best wishes that ‘Ashya continues to make such good progress’.
Finally, after three tumultuous years, the Kings felt they had been vindicated.
‘My wife said to me: “It’s all OK now. There is no need to cry.” But there were so many emotions: happiness, relief. I can’t put it into words.’ There is no need. Mr King’s elation is written on his face.
Three-and-a-half years ago, Mr King and his wife Naghmeh triggered an international manhunt after they took Ashya, then aged five and suffering from a rare brain tumour, from Southampton General Hospital without doctors’ consent in order to seek pioneering proton treatment in Europe.
They feared the chemotherapy and conventional radiotherapy he was about to receive in Britain for his particularly aggressive tumour, a medulloblastoma, would at best plunge him into a semi-vegetative state. At worst, they feared, it would kill him.
His best chance, they argued, was proton beam treatment, which wasn’t then offered in Britain. It aims radiotherapy directly at a cancer, minimising damage to surrounding brain cells. Doctors in Southampton vehemently disagreed, insisting the couple were putting their son’s life at risk.
AFTER two days on the run, the Kings were arrested in Malaga, Spain, where they had an apartment, and thrown in jail in Madrid for 72 hours, accused of child cruelty. Ashya, one of seven children, was placed under armed guard in a Spanish hospital, where he howled with despair and confusion.
Following an international outcry, the Kings were finally released. On September 5, 2014, a High Court judge granted them the right to take Ashya to Prague, which had a worldrenowned medical hospital specialising in proton therapy.
They arrived there three days later, but British doctors maintained they had reduced their son’s chances of survival by 30 per cent.
Today, Ashya attends a school near his family home full-time. He plays football, rides a bike and chatters away 19 to the dozen.
In short, aside from a barely perceptible weakness in his right side — a side-effect of the brain surgery he underwent in Southampton before receiving his proton treatment — he is much like any other eight-year-old boy, albeit a particularly gentle-natured one.
‘He’s probably the happiest he’s been since he was diagnosed,’ says Mr King.
‘He’s excited about everything. We’ve seen him depressed, not able to speak and barely able to move. He’s so full of life. When people think of Ashya they remember a sick little boy in a bed, but he’s not that little boy any more.’
I first met the Kings in Prague little more than three weeks after they were released from prison.
Ashya had just completed his second week of proton therapy and his mother wouldn’t leave his side for a moment.
She cuddled him, massaged his limbs, tempted him with spoonfuls of yoghurt. We delighted when he stuck his tongue out for the first time, marvelled when he gained control of his head to nod in response to questions.
But, despite our joy at these steps, I never could have imagined the robust boy in front of me today. His eyes light up in recognition when we meet.
He remembers it was after ‘I had the operation on my head’ and proudly shows me how he has since learnt his times tables.
When their story first broke, one of the most harsh criticisms levied at the Kings, who are Jehovah’s Witnesses, was that they were motivated more by religious beliefs than concern for their son’s health.
Observing them today, it’s clear they are deeply loving parents who just wanted to save their boy.
They still believe their son wouldn’t have survived six months if they had done as the Southampton doctors advised.
The intervening years have taken their toll, though — particularly on Mr King who has shouldered the responsibility for his son’s medical care. His hair is grey and his face lined from month upon month of worry. The past year has tested not only his belief in his judgment, but also the Kings’ 30year marriage.
For while a scan at a hospital in Malaga, where Ashya received all his follow-up treatment, declared him tumour-free in March 2015, his journey was far from over. All subsequent scans were clear, but his ninth, scheduled for last May, was the most symbolic for the Kings.
‘A tumour is like a weed in your garden. You try your hardest to get rid of it, but one day it can just grow back,’ says Mr King.
‘So children are still dying up to two-and-a-half years after their treatment. After the three-year mark, though, the chances of it coming back are much less, so we’d been hanging on for the results of this ninth scan. The hardest thing was knowing if there was a regrowth, I had no one to blame but myself.’
Mr King acknowledges that while most parents trust doctors to deal with their child the way they feel best, he and his wife played an active role in Ashya’s treatment.
‘We came up with a plan and the judge approved it, so the doctors just went along with what we wanted. We firmly believe if he’d had the treatment the doctors wanted to give him he wouldn’t be around today, but I have a conscience, so of course I had that nagging doubt whether it was the right decision. I am only human.’
Tears are never far away, and Mr King apologises for them. ‘I’m sorry,’ he says. ‘I love that child with every part of me. He’s been through so much. I don’t want anything else to happen to him.’
The scan, however, was not the good news they’d prayed for. Spanish doctors detected a cluster of abnormal blood vessels shaped much like a small raspberry.
‘When I spoke to them on the phone, they said they couldn’t tell me exactly what it was, but mentioned the possibility of a tumour. They wanted to do further tests.’
MR King was beside himself. Such was the aggressive nature of Ashya’s grade-four tumour that he knew, should it return, there would be no cure, only palliative care.
‘I couldn’t sleep for the thoughts that kept flooding in. I was imagining all sorts of scenarios. If it had come back, what would I do? Where would I go for treatment?
‘I thought, if he has a tumour, they’re going to blame it on me that I didn’t give him the chemotherapy. What will I say? The doctor in Spain will get involved. Social services will get involved. Ashya will be in a sick bed being pumped full of chemotherapy just to extend his life for six months, and I won’t be able to do anything about it.’
‘Instead of staying in bed with all those thoughts flooding my brain, I searched on the internet for what I could do to save my son.
‘The doctors have told us nobody knows why for some children it comes back. They say it’s just bad luck.’ He spits out the last two words. ‘My wife breastfed Ashya for three years. We eat organic food. I juice drinks. We try to live a healthy life. Where does cancer come from? Why would it start again?’
Terrified of bad news, Mr King did not return to Spain for the followup tests. Instead he put his son on a ketogenic diet that restricts sugar and carbohydrates, thus reducing glucose intake, which is a fuel for cancer. He also took him for weekly, and then daily, oxygen treatment.
His wife was at her wit’s end. ‘I told him to just take Ashya for the tests, I knew it would be OK,’ she says. ‘But Brett had convinced himself the tumour had returned. He became obsessive about what Ashya was eating. If I gave him a glass of milk Brett would look at it and say: “There’s too much sugar in it.” If I was giving him a banana Brett would say: “Give him half. There’s too much sugar.”
‘I couldn’t take it any more. I’d ask: “Can’t we just live a normal life, have a normal breakfast like normal people with milk, bread and orange juice?” ’
She turns to me. ‘Brett has a very strong personality. Living with him is not easy. I made a decision to live with him when I was 19 and I’m still living with him now, but I honestly felt enough was enough.
‘I couldn’t understand why he wouldn’t go to Spain and have the tests. It was making me so upset inside. I kept thinking: “Ashya’s been through so much, now you’re