Charlie Gard’s parents speak up
What they have been doing meanwhile to assert and uphold
the right of parents over their own children's fate
by Alexander Slavsky
April 27, 2018
LONDON (ChurchMilitant.com) - The parents of a sick British baby who died last year are expressing support for a sick U.K. infant following his failed legal battle and the refusal of the hospital to discharge him.
Charlie Gard's parents, Chris Gard and Connie Yates, released a statement Friday on Alfie Evans, saying, "With heavy hearts, we have watched as Alfie's case has unfolded. For those who have not been in a situation like this, it is impossible to understand the pain Tom and Kate [Alfie's parents] are going through."
Alfie is the 23-month-old with a rare degenerative neurological condition whose has survived more than three days, as of press time, without his breathing and feeding tubes.
Gard and Yates are partnering with Alfie's family to spearhead a change in the law "that will prevent parents experiencing painful and prolonged conflicts with medical professionals. Cases like these will keep happening until the law is changed."
Their son was the sick British baby who died last July after losing his legal battle in the courts, including the London High Court, Supreme Court and the European Court of Human Rights for an experimental treatment in the United States for his rare genetic disease.
The statement continued:
Since Charlie's passing in July last year, we have been working with pediatric consultants, medical ethicists, senior lawyers, U.K. politicians and other parents who have suffered through similar situations as us, to try and propose a law that will prevent parents experiencing painful and prolonged conflicts with medical professionals.
The parents are calling this law "Charlie's Law" while setting up the Charlie Gard Foundation with the almost $1.8 million dollars raised for their son's treatment abroad. It is slated for launch on June 1. The website's description says the foundation's goal is "to become one of the U.K.'s leading charities dedicated to fighting mitochondrial disease," which Charlie was diagnosed with at eight weeks old.
"The foundation raises awareness for the condition, invests in world-class research into viable treatments and supports families whose lives have been touched by this incurable disease," reads the description.
Steven Woolfe, a member of the European Parliament, announced Thursday he is launching the "Alfie's Law" campaign outside the House of Parliament to overturn the law "to bring an end to the tragic situation of parents of young children such as Alfie Evans."
He claimed that parents have "moral rights" to care for their family members while acknowledging the role of doctors and nurses in treating sick children.
Pushing for parents' rights in high profile cases, he continued:
The cases of Charlie Gard, Aysha King and now Alfie Evans, show a dangerous trend of public bodies depriving parents and families of the right to make decisions they believe are in the best interests of their children. Parents' rights should neither be ignored nor dismissed as irrelevant by hospitals and courts, who believe they know best and have the power, money and resources to overwhelm families who simply want to save their child. We demand a change in the law to restore the rights of parents in such decisions.
Gard and Yates recognized that "once cases are public it is difficult for people to be fully aware of the complexities and this often leads to ill-informed judgments on both sides and creates unnecessary conflicts."
But they insisted that "hospitals, healthcare professionals, families with sick children, the NHS and the reputation of our own government" are "better for everybody" when "addressing problems" and "creating a platform for transparency and openness so that cases like these can be dealt with before they ever reach the courts."
Alfie was born healthy in May 2016 but after missing a number of developmental milestones, his parents knew something was wrong. In December of that year, the sick toddler suffered a chest infection and was hospitalized for seizures. He remained at Alder Hey hospital in Liverpool, England ever since
[to the day he died].
What Alfie Evans unlocked
April 28, 2018
Now that little Alfie Evans has joined the angels, it is worth looking again at what really happened in this event.
We saw something extraordinary emerge. It was called “Alfie’s Army”
[just as there was 'Charlie's Army' last year]. At the hospital, crowds gathered to rage against the authorities. Around the world, small groups gathered to pray and protest. Social media was set alight as ordinary people found their voice and vented their frustration, anger and fear.
In the confusion of war many mistakes are made. The actual medical facts were no doubt extremely complicated and the ethical issues were not straightforward. Yes, a dying patient needs to be hydrated, given nutrition and pain relief, but it gets to a point where that person’s body is shutting down and can’t actually process food any longer. Must they be force fed when even that is to no avail? Of course not. Nature can take its course.
No doubt Alfie’s army were swept away by a range of other interlocking and interfering agendas. Sentimentalism played a part. Here was a cute baby boy fighting for life. All the Mama bears of the world unite! PS: I’m not mocking this. (I think it was a noble and beautiful thing to see women rise up to protect a baby.)
Then there was the English class-struggle dimension. Tom and Kate came across as a working class couple and they were locked in a struggle with the ruling elite of Britain – the medical staff, the hospital administration, the judiciary and of course the politicians and ultimately the royal family. The fact that a certain Will and Kate proudly displayed their healthy, privileged baby boy added salt to the wounds. Would a brain-damaged royal prince be given the same seemingly callous treatment?
Now let’s throw in the religious dimension. The brave father traveled to Rome to meet Pope Francis who gave him a compassionate welcome. Meanwhile his own Archbishop of Liverpool sided with the “Big Bad Wolf” of the UK establishment. The drama was heightening day by day.
The narrative emerged that establishment powers conspired against these poor parents depriving them of their child and their choice to seek further treatment in Rome. Was that really the case? The legal experts would weigh in and debate concepts like power of attorney and what rights we hand over when we accept treatment in hospital for ourselves or our loved ones.
So beneath the tragedy of the terminally ill baby boy was brewing another societal story which we would do well not to ignore.
The drama of “Alfie’s Army” should be seen as part of a larger social phenomenon connecting with the Brexit vote, the Trump victory and the rising nationalist movements across Europe.
To put it simply, the ordinary folks have had enough.
- They have had enough of governmental over-reach.
- They’ve had enough of the liberal, “tolerant” ruling classes who are, in fact, increasingly totalitarian.
- They’ve had enough of the technocrats invading their privacy.
- They’ve had enough of the immoral new morality – of naked men cavorting in Pride parades and little boys being castrated and pumped full of drugs because they think they might be girls.
- They’ve had enough of the seemingly helpful and compassionate welfare state who end up controlling the individual and reducing them to dependent drones.
- They’ve had enough of global economic systems, big government, multi national companies and the control of the techno media.
They’ve had enough, but they also realize their ultimate impotence.
- How do you fight this nameless, formless global oligarchy?
- How do you fight against a totalitarianism that smiles, does glossy PR campaigns and seems to be ushering in a brave new world order?
- How do you fight against the media giants, the multinationals, the big government, the unelected swamp lords or the army of sincere do gooders that are controlling your world?
- How do you fight against the domineering well meaning social worker and the bureaucracy behind her?
The totalitarianism we are facing in our age is one that is completely different from communism and fascism.
-They wear business suits, not SS uniforms.
- They control the world with laptops and apps, not machine guns and tanks.
- They persecute with lawsuits not the Gulag.
- They will manipulate and control with their ideologies and propaganda, but it is done through game shows, reality TV, the broadcast news and the respectable BBC.
That is what Alfie Evans unlocked. This is what Alfie’s Army was really about, and that is what the Trump win was really about and that is what Brexit was really about.
It is about the rising rage of the ordinary folks, and the folks on the top of the heap would do well to listen and channel that rage because the more they try to suppress it the greater it will become.
[Modificato da TERESA BENEDETTA 30/04/2018 03:57]