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The Patient’s Right To Choose:

How The Ruling in The Charlie Gard Case Endangers Civil Liberties

· Civil liberties,epigenetics,health

In the year 1930, an epidemic was slowly tapering. For several generations, a disease known as consumption, otherwise known as the white plague or tuberculosis, had killed millions of Europeans in the 18th and 19th century. Some of the literary icons who had succumbed to the disease included Honoré de Balzac, Albert Camus, John Keats, DH Lawrence, Molière, George Orwell and Robert Louis Stevenson. Although researchers at the time hypothesised that consumption was linked to a contagious bacterium, mainstream medical practice believed that consumption was a genetic disease. For most of the 19th century, tuberculosis was thought to be a hereditary, constitutional disease rather than a contagious one.

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Tuberculosis sanatorium in the early part of the 20th century.

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Doctors at hospitals performed blood transfusions on patients and in soldiers during WWI who would subsequently die from septic shock and kidney failure before 1940 when blood typing became more widely known.

In the year 1930, if you, your child or anyone you knew had a cough, such as those symptoms of the common cold, doctors would’ve treated you with mercury, and you might’ve been given a blood transfusion. During this era, it was simply the luck of the draw if the patient would receive the right blood type or not, and many hospitals were still not able to type blood reliably and there were many deaths as a result of ABO incompatibility.

When we examine the annals of medical history, it could quite possibly be hypothesised that consumption, or the white plague, was a disease that became an epidemic largely through the widespread ignorance and malpractice of medical doctors. Ignorance of antisepsis, asepsis and immunology had resulted in the deaths of millions of people across Europe, spanning two centuries.

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George Orwell wrote the groundbreaking book, 1984 whilst suffering from tuberculosis and died at the age of 44. During this time, doctors often treated patients with mercury, a neurotoxin and blood transfusions as they believed tuberculosis was a "genetic disease".

However, let’s take a look at legal rulings in our modern times. What if in 1930, you had refused treatment from the hospital and the courts had ruled in favour of doctors and the hospital if they treated you for tuberculosis instead of the wishes of you, or the parent of the child, such as in the Charlie Gard case? What if you were forced to do as doctors ordered you to do?

In the highly publicised Charlie Gard case, doctors at the Great Ormond Street Hospital in the UK were given clearance by a judge to put a 10 month old child to death, by turning off his life support, because according to the opinions of the doctors, the child would’ve “continued [in] pain, suffering, distress” and that treatment elsewhere would result in “causing significant harm”.

Let’s remember in 1930, doctors believed tuberculosis to be a genetic disease. In fact, this kind of diagnosis could also be reflective of our own era. When traditional medical doctors are often confused about the causes of disease, many times, they revert to a diagnosis of: it’s a “genetic disease" or most likely an “autoimmune disease".

Genetic Disease vs. Epigenetic Disease State

A genetic disease is a genetic abnormality that often results from mistakes made in replication during the gestational period when X chromosome inactivation is interrupted, and mistakes are made in DNA methylation in which repetitive elements in our DNA are not silenced or an error occurs in imprinting X and Y chromosomes. Examples of genetic diseases are Beckwith Wiedermann Syndrome, Prader Willi Syndrome and Angelman Syndrome, in which imprint control regions in human chromosomes 11, 15 and 18 lead to a gene expression in which controls certain kinds of growth - such as in Beckwith Wiedermann which results in an overgrowth at birth and in Prader Willi which results in spinal muscular atrophy.

Another genetic abnormality or “disease” are chromosomal conditions in which men or women have an extra chromosome, such as in the Klinefelter Syndrome in which instead of possessing the typical XY normal karyotype, men have an XXY pattern that leads to sterility and oftentimes the growth of breasts (eg, gynaecomnastia). Similarly, XYY syndrome is the addition of an extra Y chromosome that also leads to abnormal karyotyping that leads to heightened stature in men.

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TV presenter Annabel Giles revealed her son Ted (aged 8 in photo) was born with abnormal karyotyping and has the genetic disorder XYY syndrome which causes increased height in males.

These genetic diseases are immediately noticeable at birth, and must be distinguished from epigenetic disease states. An epigenetic disease state is one that arises due to exposure to substances, toxins or other elements in the environment that leads to the silencing and activation of certain genes. This isn’t a genetic disease, but an epigenetic disease state, terms in which probably most mainstream medical doctors use interchangeably without knowing the distinction between them. For example, let’s examine breast cancer. A lot of hype has been promoted in the media that breast cancer is due to a genetic mutation in BRCA1 and BRCA2 genes, and that it is a genetic disease that is inherited. Mainly this hype has been promoted through celebrities such as Angelina Jolie who underwent a double mastectomy and hysterectomy because after a gene screening, her doctors discovered mutations in BRCA1 and/ or BRCA2, in which self-repairing genes that target certain types of cancer cells were switched off.

However, with the advent of epigenetics, researchers are now beginning to understand that there is a difference between a genetic disease vs. an epigenetic disease state. One example we can utilise to understand this difference is through nature: the fertility of queen bees. A queen bee is not genetically different from female worker bees, however, she is fed on royal jelly, in which the metabolism of a fatty acid in this substance (eg, 10HDA) leads to a reactivation of a gene that turns on fertility, so that the queen bee remains fertile for the entire duration of her life. This is an epigenetic control of gene expression, one that is derived through the environmental exposure to a specific substance and not a genetic disease.

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Queen bees are genetically the same as worker bees, but due to their ingestion of royal jelly, re-activates a gene for fertility, so that they continue to be fertile for life and grow larger than other bees.

Let’s now examine what doctors at Great Ormond Street Hospital diagnosed Charlie Gard with. Charlie Gard was a baby who was born perfectly healthy, until after several months when his parents noticed something off. The doctors at Great Ormond Street Hospital say that Charlie Gard has Mitochondrial DNA Depletion Syndrome (MDDS) and that he will unnecessarily suffer for the rest of his life due to this “genetic disease” that he inherited from his parents.

However, last year, research into Mitochondrial DNA Depletion Syndrome suggests that patients suffering from certain types of this disease had elevated levels of neurotoxins in their tissues, such as mercury, arsenic and lead and that these neurotoxins lead to the mutations in the MPV17 gene that lead to this dysfunction. In other words, exposure to these toxins lead to silencing of genes that control muscle and brain development. These kinds of findings would then point to MDDS as an epigenetic disease state, caused by exposure to neurotoxins as opposed to a “genetic disease” as doctors at Great Ormond Street Hospital have suggested and given an early death sentence to a child who is just 10 months old.

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Taurine has been studied by researchers to completely eradicate epileptic seizures and abnormal cardiac arrhythmia with oral supplementation.

In another interesting study, mitochondrial myopathy and mitochondrial diseases were also found to be closely related to the symptoms of taurine deficiency. Taurine acts as a neurotransmitter that regulates the central nervous system and is also an amino acid that is the required building block of protein and found in large amounts in the brain, spinal cord, retina, heart, and blood cells, platelets. Without taurine, our eyes wouldn’t be able to see, and our brains and muscles would not develop nor function normally. In fact, these symptoms seem very similar to what Charlie Gard appears to be suffering from. His doctors at Great Ormond Street Hospital say that Charlie Gard will never be able to see, breathe on his own, has muscle weakness and is suffering from brain damage, and that he has a “genetic disease” although he had been born perfectly healthy.

If we examine the children of Flint, Michigan, who were exposed to toxic amounts of lead and other substances in their drinking water, they too suffered a similar type of brain and muscle damage which could be reversible. These children did not have a “genetic” disease, they were unintentionally poisoned through something they thought harmless: drinking tap water; however, they were exposed to the neurotoxins after their brain had already developed, and not in the case of Charlie Gard, a baby who was born healthy, but over a period of several months became ill. Babies and young children are most susceptible to neurotoxins in the environment because they are rapidly developing. In the United States and United Kingdom, elevated leadmercury and arsenic concentration in reconstituted baby formula, baby food and juices have lead to many recalls, beginning from the 1980s up to the present time and many still sit on the shelves of supermarkets.

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Baby formula, baby food and juices have been found in the UK and United States to have elevated levels of arsenic, mercury and lead.

So my question is did the doctors at Great Ormond Street Hospital test for neurotoxins such as arsenic, mercury and lead in baby Charlie Gard? What makes them think he has a “genetic disease” rather than suffering from symptoms of an epigenetic disease state? We must also consider the fact that the judge ruled in favour of shutting down Charlie Gard’s life support to prevent “unnecessary suffering”. If those were the only conditions necessary to put a child’s life to death, then why not extend that to everyone across the globe? What about children suffering in poverty in India, who will most likely never prevail from their circumstances? Why not put them to death to “ease their suffering”? What about elderly people in senior homes who suffer from dementia? Why make them suffer needlessly and what kind of life is it to live out your last days in a hospital bed or a wheelchair, not remembering who they are? Why not just put them to death as well?

The mystery of life often eludes doctors because medical doctors are most often, only familiar with death, but when a patient survives contrary to their beliefs, it eludes them. To be fair, I think most doctors have patients’ best interests at heart, but due to limitations of education, in experience and practice, they are often not in the position to conduct research in which they have not received active funding.

This is why we should consider doctors, as specialists like any other, such as financial advisers or campaign managers. Their word should not be God, but the words of advisers who share their knowledge so that patients may make informed decisions. It should not be what happened in the ruling of the Charlie Gard case, when a British judge ruled in favour of doctors at Great Ormond Street Hospital, who were given the power to make the ultimate decision on what happens to a child who cannot yet speak, instead of giving that right to his parents, who have hope that there exists a treatment out there that may save him.

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Hyperbaric Oxygen Therapy (HBOT) chamber. A patient is exposed to pure oxygen that is 1.5-3 times the normal atmospheric pressure which leads to delivery of oxygen to cells that accelerate healing. I wrote about hyperbaric oxygen therapy in a previous article.

When I was in Athens, Georgia in the beginning of the year, I met an entrepreneur and founder, and an incredible father, Hulet Smith who is CEO of a company called Rehabmart. His eldest daughter Sophia was discovered to be bleeding in the brain inside the womb during the third trimester and when she was born, she was diagnosed with cerebral palsy. Against the traditional advice of her doctors and specialists, Hulet decided to pursue a different, integrative path than traditional western medicine which often uses pharmaceuticals to treat a disease. At the time, hyperbaric oxygen therapy (HBOT) was not an experimental treatment, and although it has had a long history of practice and use, it is still relatively obscure in traditional medical practice. HBOT is a pressurised oxygen chamber that delivers oxygen to cells which accelerates healing.

Sophia was given the prognosis by her doctors to be legally blind, wheelchair bound and severely intellectually impaired for the rest of her life. Today, Sophia is not only physically active and can walk, and see, she is miraculously studying at the normal level of her grade and age.

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She still has problems with eyesight and needs to wear glasses, but overall, she is leading a life in which she is not held back by her initial brain injury in the womb.

Imagine for a moment, if doctors had the power to put her to death against the wishes of her parents to “ease her suffering” or if people in history, such as Helen Keller and Stephen Hawking were given an early death sentence? Imagine what would’ve happened to that little newborn baby who couldn’t yet speak, if Sophia’s parents had decided to follow the advice of her doctors, or worse yet, if her doctors had the power to make the ultimate decision to put her to death before she had a chance to live?

The truth is, we do not have that intrinsic right to make that decision for anyone, but we must carry the responsibility to protect the rights of those who cannot speak, children such as Sophia, and Charlie Gard whose parents want to pursue alternative treatment than the death sentence handed to the latter by doctors at Great Ormond Street Hospital. The ruling by the court in favour of doctors at Great Ormond Street Hospital not only endangers those who cannot speak for themselves, but for all of us, by taking away our right to choose.

Disclaimer: This article is not intended to diagnose any diseases and is for educational purposes only.