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  • Why This Knowledge Is So Needed Now

    Charlie Gard: 'Beautiful little boy' at heart of UK legal dispute dies

    Updated about 5 hours ago
    PHOTO: The case became a flashpoint for debates on the role of the state and the rights of children. (GoFundMe: Charlies Fight)
    RELATED STORY: Charlie Gard to be moved to hospice to die as no agreement reached: British judge
    RELATED STORY: 'What if it was your child?': Charlie Gard's parents lash out as judge orders baby can't die at home
    RELATED STORY: Parents, UK hospital clash over taking baby Charlie Gard home to die
    MAP: United Kingdom

    Charlie Gard, the critically ill British baby at the centre of a legal battle that attracted worldwide attention and debate, has died days short of his first birthday, according to a family spokeswoman.
    Key points:

    • Charlie suffered from mitochondrial depletion syndrome, a rare genetic disease
    • His parents had hoped to take him to the US for experimental treatment
    • Doctors objected, and the dispute ended up in court

    Charlie suffered from a rare genetic disease, mitochondrial depletion syndrome, which caused brain damage and left him unable to breathe unaided.
    The 11-month-old's plight became known around the world when his parents, Chris Gard and Connie Yates, battled to take their child to the United States for experimental treatment.
    "Our beautiful little boy has gone, we are so proud of you Charlie," Connie Yates, the baby's mother, was quoted as saying by the Daily Mail newspaper.
    A short life that captured hearts

    The baby boy whose fight for life made headlines and sparked ethical debate around the world has died this is what happened in his short life.

    "Everyone at Great Ormond Street Hospital sends their heartfelt condolences to Charlie's parents and loved ones at this very sad time," spokeswoman for the hospital where Charlie was being treated said in a statement.
    His parents, Chris Gard and Ms Yates, raised more than 1.3 million pounds ($2.14 million) to take him to the US for the treatment, but Charlie's doctors objected, saying the treatment would not help and might cause him to suffer, and the dispute ended up in court.
    The case became a flashpoint for debates on healthcare funding, medical intervention, the role of the state and the rights of children.
    After months of legal battles, High Court Judge Nicholas Francis ruled this week that Charlie should be transferred to a hospice and taken off life support after his parents and the hospital that had been treating him failed to agree on an end-of-life care plan for the infant.
    PHOTO: Scans earlier this week showed that the damage to Charlie's body was irreversible. (AP: Family of Charlie Gard )

    Under British law, it is common for courts to intervene when parents and doctors disagree on the treatment of a child.
    In such cases, the rights of the child take primacy over the parents' right to decide what is best for their offspring.
    The principle applies even in cases where parents have an alternative point of view, such as when religious beliefs prohibit blood transfusions.
    The case made it all the way to Britain's Supreme Court as Charlie's parents refused to accept decisions by a series of judges who backed Great Ormond Street.
    But the Supreme Court agreed with the lower courts, saying it was in Charlie's best interests that he be allowed to die.
    PHOTO: People campaigned outside the High Court in London to show support for allowing Charlie Gard to travel to the US. (Reuters: Peter Nicholls)

    Charlie's case gains worldwide attention

    The case caught the attention of US President Donald Trump and Pope Francis after the European Court of Human Rights refused to intervene.
    The two leaders sent tweets of support for Charlie and his parents, triggering a surge of grassroots action, including a number of US right-to-life activists who flew to London to support Charlie's parents.
    The intervention of two of the world's most powerful men made the case a talking point around the world.
    Why Trump and the Pope are right

    In the face of such reasonable disagreement, society should accede to the wishes of the parents and err on the side of a chance of life, two ethics professors write the alternative, being certain death.

    Images of Charlie hooked to a tube while dozing peacefully in a star-flecked navy blue onesie graced websites, newspapers and television news programs.
    The heated commentary prompted Judge Francis to criticise the effects of social media and those "who know almost nothing about this case but who feel entitled to express opinions".
    But in the end, the increased attention did little for Charlie.
    While offers of help from the Vatican's Bambino Gesu children's hospital in Rome and doctors at the Columbia University Medical Centre in New York were enough to reopen the case, the High Court ultimately decided the proposed treatment would not help Charlie.
    His parents gave up their fight earlier this week after scans showed that Charlie's muscles had deteriorated so much that the damage was irreversible.
    "Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn't save you," his parents wrote when they announced their decision.
    "We had the chance but we weren't allowed to give you that chance.
    "Sweet dreams baby. Sleep tight, our beautiful little boy."

  • #2
    What it's really like to live with drone warfare


    Updated Fri at 8:58am
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    The US Air Force's drone program tracks down terrorists and protects troops.
    But life in its shadow has left a generation of Afghan civilians physically maimed, mourning lost family members and fearful of future attacks.
    On the other side of the world, in America, former drone operators are speaking out about the dark side of this technology too.
    Australian PhD student Alex Edney-Browne has been collecting stories of trauma from both perspectives. In an exclusive for Science Friction, these are their words.

    Aarif, 36, from Khost province, lost her husband, son, father-in-law and three nephews in a drone attack in 2015. She is now a single mother to her 2-year-old daughter.
    "Before I heard the bomb, I was busy with the animals: separating the baby goats after their mothers had breast-fed them," Aarif says.
    "I was keeping an eye out for my family, as I knew they would soon arrive back home for lunch.
    "The explosion was heavy. The land was shaking. My house was shaking. I ran outside to see what had happened.
    "I saw from a distance the burnt-out cars, and tried to get closer but there were Afghan army there who wouldn't let me. But I could tell quickly that it was my family, because they were due to arrive home very soon and never did.
    [COLOR=#0D5490 !important]I ran closer and saw smoke and fire, the car was burning, and there were pieces of bodies. My husband, my son, and three brother-in-law's sons and my father-in-law were killed. All of them.

    "We have a very heavy load of sadness. A sad life has been given to us. Many women are now young widows and their young children are left for us to take care of.
    "I have trouble getting to sleep and I also wake up during the night from fear. I can't forget what I saw. It comes to me in the night like a dream. I get these nightmares a lot."

    Shanaky, 25, from Wardak province, was blinded in both eyes by a drone attack in 2015. His family spent their life savings to restore sight in one of his eyes.
    "The day before the attack, I heard a drone circling overhead," Shanaky says.
    "The next day, I was doing irrigation work in our apple orchard, and I was attacked. I just saw a flame, and I lost consciousness. I saw fire in front of me and heard the explosion, but that is all I remember.
    "My memory became very weak. Before I was attacked, I was in the top of my class in the first or second position. After the attack, I lost all my chances of kadr [the top position], as studying was very difficult for me.
    [COLOR=#0D5490 !important]Before the attack, I could do any kind of work. I can't anymore. I could drive, but now I can't. I can't work well on the computer anymore. If I go to the bazaar to work, the dust scratches at my right eye and makes it water.[/COLOR]
    "My family had a big hope, because I am the oldest son in the family, that after graduation I would have a good job and would be able to support them economically.
    "But when this happened the whole family became very sad. And all the money they had, they spent it on me for my medical costs."

    Abdul, 45, from Wardak province, lost his brother to a drone attack in 2014. He lives with the torment of drones frequently hovering over his mountain village.
    "I think of my brother a lot because he was close to me. And then it goes to flashback. Sometimes I have nightmares also, especially when I hear the drone is around," Abdul says.
    "They are about the day my brother died, but also more about the drone sound. The fear is because when we hear the drone, we think it will strike again, like it struck and killed my brother.
    "My brother was taking the animals to the mountain we usually go to. At around 3:00pm the drone hit my brother, who was killed.
    "We are mountain people. We go to the mountain to collect wood for fuel, for fires. We need it for our cooking and to make bread. We also take our animals to the mountain. Our lives are connected to the mountain. Fear has replaced enjoyment: we go to the mountain with fear, we go quickly.
    [COLOR=#0D5490 !important]I don't like that Americans can see into my house, my home. It is not joyful. It is not good. Especially for Pashtuns: Pashtuns don't like people seeing into our house from above.[/COLOR]
    "In Pashtun culture, the respectful thing to do is to knock on someone's door.
    "It is not good to have someone see your family members to watch women and children. It is dishonourable and disrespectful. The women in the village are very disappointed. They don't like it."

    Brandon Bryant is a former US Air Force drone sensor operator from Missoula, Montana. He battles with nightmares, depression and post-traumatic stress disorder (PTSD) resulting from his work in the drone program.
    "You know how to make life cheap? Teach someone to kill someone else with the push of a button," Brandon says.
    "I felt like a pervert a lot of the time. I am sitting in this cold, dark bunker, an air-conditioned steel box, in the middle of the Nevada or New Mexico desert, watching people live their lives out, while I'm behind a computer screen like the f**king Matrix. I had no life of my own.
    "The culture was so vastly different to anything I had experienced. You'd watch people go to the marketplace and to cafes, and eat food. In Afghanistan they'd sleep on their houses because it was too hot to sleep inside. I've seen weddings, funerals and all sorts of things.
    [COLOR=#0D5490 !important]You couldn't see detail. You couldn't see a person's face. You are typically looking at shadows, or puppets.[/COLOR]
    "The disconnect doesn't come between me and the people on the ground. The disconnect comes between me and myself. My job was sickening. I had no life of my own. I didn't feel human myself.
    Listen to the episode

    Brandon tells his deeply personal drone war story.

    "I've watched coalition soldiers die. I've watched enemy combatants die. I've watched innocent people die. They all die the same, the innocent as well as the guilty.
    "We are just a bunch of voyeuristic nerds utilising technology to reign destruction on people who are living in their own country, trying to live out their lives as best as they can.
    "I remember everything, that's the problem. That's why I have nightmares."

    Earlier this year, Alex Edney-Browne travelled to Afghanistan to meet and interview people who lived in areas subjected to drone attacks and drone surveillance. For her PhD research, she wanted to find out how drones are affecting Afghan lives and livelihoods.
    "Drones are characterised by governments and the military as an accurate weapon that effectively locates and kills terrorists and limits damage to civilians," Alex says.
    "Rarely does the Western public hear from the civilians that drones are allegedly protecting. The Afghans I spoke to had lost family members, were personally injured in drone attacks, or lived under drone surveillance.
    [COLOR=#0D5490 !important]Young men told me about how they used to play cricket in the evenings and stay outside till late talking with their friends. With drones hovering above, they are now too scared.[/COLOR]
    "Many told me that cultural practices of hosting neighbours for dinners and staying over at a family member or friend's house if they were mourning a loved one ('gham shareky': sharing in one's sadness) had reduced in case it's mistaken for nefarious activity.
    "Farmers who often need to irrigate their lands at night now turn their torches off and return to their houses in the dark when they hear drones.
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    Science Friction is a podcast about science, culture and everything in between.

    "Despite the harrowing subject matter, the people I met were relieved to tell their stories. Most had received no explanation or apology, let alone compensation, from US coalition forces after drone attacks.
    "Afghans who were alive before the Soviet occupation of Afghanistan in 1979 shared fond memories of Western tourists coming to their villages. Before war began, Afghanistan was on the 'hippie trail' and regularly visited by Westerners.
    "Most people were curious about the West, and had difficult questions for me too.
    [COLOR=#0D5490 !important]A young man a teacher in his early 20s asks me if I have heard of people who equate all Muslims with terrorists. I tell him that Islamophobia is increasing in the West and partly explains the rise of leaders like Donald Trump.[/COLOR]
    "Shanaky asks if I could sponsor him for asylum, so that he could have the vision restored in his other eye at a Western medical facility.
    "I tell him about the global asylum seeker crisis and Western government attempts to limit the number of asylum seekers they accept. I say I will look into it, but that I am not hopeful.
    "It goes unsaid but the subtext is blatant: the West inflicts violence and then refuses help to those who are injured by its actions. I look at my feet for the entire conversation.
    Our Focus: Science

    Explore more news and features as the ABC celebrates National Science Week.

    "Two months later, and I'm in the United States for the other half of my research: examining the effects of drone warfare on US Air Force drone veterans.
    "I am in the Smithsonian National Air and Space Museum in Washington DC, standing in front of a Predator drone. It is my first time seeing a real life, full-sized drone. It is bigger than I imagined.
    "A video of drone kills is playing on loop. Teenagers walk past the display saying 'woah!' and 'cool!'
    "A child, about 12 years old, stops next to me. 'Mom, what's that?' he asks. His mother says: 'It's a drone.'
    [COLOR=#0D5490 !important]She idles up to the sign and reads for a few seconds, adding: 'They watch and locate terrorists and then they kill them.'[/COLOR]
    "I consider interrupting. I consider informing them that they also kill civilians and destroy their livelihoods. I decide against it, but am awash with cowardice and shame.
    "I feel sick. I feel sad. I sit for 10 minutes in the bathroom of the National Air and Space Museum paralysed by the contrasts."

    • Research: Alex Edney-Browne, University of Melbourne
    • Illustrations: Rachel Ang
    • Producer: Natasha Mitchell for Science Friction




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