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Doctors want to treat this dying boy with medicine. His parents want to try something else.

Ashya and Brett.

By HOLLY WAINWRIGHT

It’s a heartbreaking image. A desperate father wheeling a very sick little boy away from the hospital that saved his life, knowing that they’re not coming back.

The boy, Ashya King, is five, and he has brain cancer. He is being fed through a tube. At the time that his father, Brett, took him from the hospital, the machine that was feeding him was battery-operated, and the battery was running down.

It seemed to be an enormous risk. But Ashya’s family firmly believed that they were only doing what was best for their son. They had been online, and they had researched a treatment that they thought would be better for their boy (read more about that here) , and when they’d suggested it to Ashya’s doctors, they had been shut down.

So they took him.

They took him with the idea of getting him to a country that would offer him the care he believed Aysha needed. Southampton is a port town, so it wasn’t hard to gather up his six siblings and whisk them all away on a ferry to another place.

Who is to say they were wrong? The British police, clearly, who issued a warrant for the family’s arrest and sparked a man hunt in three countries.

At the time of writing, Ashya’s parents, Brett and Naghemeh King, 45, are under arrest, charged with child neglect. Ashya is back in hospital, in Spain.

Brett and Naghemeh King are currently charged with child neglect.

This is a complex story of conflicting medical advice, parental desperation, religion (the Kings are Jehovah’s Witnesses) and a clash of opinions about an expensive and experimental treatment. A little boy’s life, and a family’s soul, hangs in the balance.

Brett and Naghemeh insist that they did not take a risk with their son’s life, in a video posted on YouTube. Brett, with Aysha lying beside him in a nappy and singlet, shows the machine that Asyha is connected to and says, “There’s been a lot of talk about this machine, as you see it’s all plugged in. We’ve got loads of these feeds, we’ve got iron supplements and Calpol.”

But what it calls into question is who should be ultimately responsible for making decisions about a child’s health? The parents, signing forms and waivers, praying and Googling by their loved one’s bedside, or highly-trained medical professionals who are realistic about trials, treatments and the economic realities of treating the sick?

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I am timid in the face of medical wisdom. I have always placed my absolute trust in doctors. And mostly, mostly, I have been absolutely right to do so.

But I have never paced in the shoes of a parent with a seriously sick child. I have never had to have anyone tell me that there’s nothing more they can do for my babies, or that the one treatment that might ease their suffering will have far reaching side effects that could rob them of their hearing, or sight. So far, I’ve been unimaginably lucky. And as I type that, I reflexively touch wood.

Five-year old Ashya King

Because parents have so much to lose. And we are hard-wired to protect our children from suffering and to fight for the best for them. When the definition of what that means get blurry, when we reach out for answers and come up empty-handed, things get complicated and parents get irrational.

“We pleaded with them (in the Southampton hospital) for proton beam treatment,” says Brett. “They looked at me straight in the face and said with his cancer – which is called medulloblastoma – it would have no benefit whatsoever.”

“I went straight back to my room and looked it up and the American sites and French sites and Switzerland sites where they have proton beam said the opposite, it would be very beneficial for him.”

What will happen to Ashya remains to be seen. His family swear they will not take him back to the UK unless they are promised the therapy they want – although not available in the UK (or Australia), some British patients are funded to travel overseas to receive it – but some things are clear.

There will always be desperate parents willing to risk their own freedom to help their children. We will always be blinded to obstacles by our love for our kids. And there will always be a medical treatment that promises everything, that is just out of reach. And there will always be Dr Google, bringing it all together.

Little Ashya is all all our thoughts tonight.

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