ASHYA’S MIRACLE
He’s the boy whose parents were jailed for abducting him from an NHS 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
Boy abducted from hospital by parents is cancer free
WHEN Brett King read the letter from a leading child cancer specialist at Southampton General Hospital after his eightyear-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. A
FTER 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 world- renowned 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 in Southsea, Hampshire 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’ 30-year 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.’ T
HE 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. UK 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 making him go through this and you’re not even sure the little thing in his head is a tumour.” ’
Hoping only for her husband to
see reason, she left the family’s Southsea home for their apartment in Malaga. ‘I kept believing Brett would see sense and bring all the children out and let Ashya have his test.’ Brett didn’t.
At the beginning of September, Naghmeh consulted lawyers about a divorce. ‘Brett and the children came out to see me over summer but not all together.
‘I went back in September but it was as if Brett was addicted to looking on the internet for things that would fight cancer. he took Ashya off school lunches and was giving him raspberries, olives and dried-up bacon instead.
‘I couldn’t take any more. Ashya looked so skinny and deprived.
‘Every morning I woke up and I’d get upset. In the end I went to see a lawyer to find out about a divorce.’ Thankfully, her actions brought matters to a head. Mr King loves his wife and family dearly. he acknowledges now he was ‘hyper’, ‘ sleep- deprived’ and literally shaking with stress and worry for Ashya.
he and his wife agreed to take their son to Malaga for the tests on September 27, which revealed the ‘shadow’ was not a tumour but a cluster of abnormal blood vessels, known as a cavernoma, commonly found following radiotherapy.
‘I was so choked up when the radiologist told me,’ says Mr King. ‘he had to say to me categorically: “There is no tumour.”
‘In the car I started crying. My emotions were so stirred up. It was one of those days when you could run down the street skipping. I was incredibly relieved. But because of the cavernoma, we needed to see a neurologist. ‘We’d been on this emotional ride for three years taking Ashya to Spain for medical care, taking him out of school, leaving the other kids. I knew he was going to need longterm monitoring and felt now was the time to build bridges with the medical team in Southampton.’ Upon his return to Southsea, Mr King called the oncology department at Southampton General hospital. This was the hospital that had fought them tooth and nail, whose intervention had led to them being arrested and thrown into jail, which had tried, all the way to the high Court, dictate what was best for their child. ‘I just said: “Can you help me?” There was no nastiness, no unkindness. They said: “Bring the scans this afternoon.” ’ It was the first time the Kings had returned to the hospital since stealing their son away three years before. ‘When we stopped in the carpark I took Naghmeh to the charity house the children and I had stayed in,’ says Mr King. ‘That was strange. I could remember our children playing in the garden, never imagining what was going to happen.’
HE SHAKES his head in wonderment. Southampton confirmed the MRI scans show Ashya is tumour-free.
The knowledge is a weight off both their shoulders.
Dr hernan Cortes Funes, the head of the oncology department at the respected hC Marbella International hospital in Spain, who has treated Ashya since he was discharged from the hospital in Prague, says he is in remission and the chances of the tumour returning are now ‘very low’.
he says, ‘This isn’t an exact science but three-and-a-half years is a good time to presume he won’t relapse. he is in remission and there is no sign the tumour will return, although he will need to be monitored with yearly MRIs.
‘In the time we’ve been treating him, he has learnt how to walk and talk and is doing well at school. It is now widely recognised proton therapy is the best treatment for children with brain cancer.’
‘We can look at Ashya now and think about a future,’ says Mr King. ‘he’s full of questions: “Why is the sky black at night?” “Because the sun’s gone.” “Where has the sun gone?” “It’s behind part of the earth.” “Why has the moon got light then?”’ he laughs. ‘It’s one question after the next.’
‘he’s getting stronger. We go walking every day. his right side needs to recuperate more. When he runs, he leads with his left leg, but it’ll come. he’s able to go up and down stairs on his own. he’s riding a bike. When he began to ride it I’d hold on to him. Eventually he asked me to let him do it on his own.
‘It was beautiful to be able to give him the freedom and see he was able to handle it. It will be beautiful to watch him grow into a young man who, yes, will always be affected to some degree by the last three years, but not as badly as he would have been if we hadn’t done what we as parents felt was right.’
Indeed, a study published in The Lancet Oncology journal nearly 18 months after the Kings fled Southampton General hospital confirmed proton beam therapy causes fewer side-effects in child cancer patients than conventional radiotherapy.
‘Just because your child goes into hospital it doesn’t mean you should leave your parental rights at the door,’ says Mr King. ‘Ashya is testament to that.’