How European Courts Just Failed Charlie Gard And The Study Of Mitochondrial DNA depletion syndrome

European Court of Human Rights recently ruled they would not be stepping in to prevent 10-month-old Charlie Gard from being taken off life support

  • Charlie was born with a rare condition called Mitochondrial DNA depletion syndrome

  • Doctors at Great Ormond Street Hospital requested that Charlie be taken off of his ventilator

  • Charlie’s parents managed to raise £1.3 million on Go Fund Me to have the infant transferred to America for an experimental treatment

  • Charlie was scheduled to be take off life support on July 30 but the hospital has allowed him to live through the weekend

  • On June 27 the European Court of Human Rights ruled they would not interfere with the British Supreme Court’s decision

Just ten months ago in Bedfont Ward, England, Chris Gard and Connie Yates were blessed with the birth of Charlie Gard. What Charlie’s parents did not know is that they carried a faulty gene that would cause their baby to develop mitochondrial depletion syndrome.

What Is Mitochondrial DNA Depletion Syndrome

Mitochondrial DNA depletion syndrome (MDS) affects tissue found in the muscle, liver, or both the muscle and brain, respectively. MDS is known to be fatal in infancy and childhood. However, there is little known about MDS due to it being a very rare disease. In fact, Charlie is said to be only one out of 16 known cases of the condition.

DNA is found in the mitochondria of cells, which is the source of respiration and energy production. What this means for Charlie is that there is no energy going to his muscles, kidneys, or brain. Charlie’s parents did not learn that they were carrying the genes or that their son had MDS until he was three months old.

Great Ormond Street Hospital

As Charlie began the fight for his life, doctors at Great Ormond Street Hospital decided Charlie should be able to die with dignity and requested permission to shut off the infant’s ventilator.

Meanwhile, Charlie’s parents had been frantically trying to find a way to save their son. They finally found a slight ray of hope after discovering an experimental medicine and a doctor in America that would possibly be able to help Charlie. The doctor even accepted Charlie into his hospital.

It would not be an easy task to get a terminally ill child from England to America for an experimental treatment. The estimated cost was £1.3 million. The parents decided to make a Go Fund Me campaign with a goal of £1.3 million, a challenging amount indeed.

Charlie and his parents did not realize the amount of support the family had gained from around the world. The Go Fund Me campaign has passed the set amount of £1.3 million, meaning the family could have completely covered the trip to America and Charlie’s treatment. It a horrifying series of events, the family would quickly learn the money was far from their biggest challenge.

The Highest Court In The Land

On April 11, the parents of Charlie went before a court to try and challenge Great Ormond Street Hospital’s request to take away the infant’s ventilator. A judge at the High Court sided with the doctors and said Charlie’s ventilator could be turned off.

On May 2, Charlie’s parents took their fight to the Court of Appeal and pleaded with senior judges to let them try and save their brain-damaged son. Their pleas fell on deaf ears, as on May 25, the Court of Appeal judges upheld the High Court’s decision. Charlie’s life was set to end at midnight on May 31.

Hours before his life support was scheduled to be turned off; Charlie had yet another little bit of hope when Britain’s Supreme Court agreed to review the case. Charlie would remain on life support until the Supreme Court reached a decision. At the very least the decision bought the family a little bit more time together.

A preliminary hearing was held on Thursday, June 8, where the highest court in the land decided that Charlie’s life support must be turned off.

European Court Of Human Rights

Charlie’s parents, who swore to fight until the bitter end, and their lawyers took the fight to the European Courts to challenge British laws over parental right. On June 27, the European Court of Human Rights ruled that they would not intervene. Charlie was now set to lose his life on June 30.

Charlie’s parents begged Great Ormond Street Hospital for just a little more time with their son. There request was to at least wait until Monday for family members to be able to see Charlie one last time. Great Ormond Street Hospital granted their wish, and the family will get a few more precious days together.

The case raises enormous questions about parental rights. Here we have a family that has raised the money to give their son a treatment that may help him, but instead, he seems to be a death row prisoner at Great Ormond Street Hospital. Charlie’s story is extremely disturbing for two reasons.

It highlights an issue of agencies, law enforcement, and medical practitioners holding more power than parents when it comes to decisions for the well-being of a child. If the family has the means to do anything to save their child, and even another doctor is willing to try, where does the problem truly lie? Is this a case of death with dignity, or an abuse of power?

The decision to end Charlie’s life also hinders more research that could be conducted on a highly rare disease and the possible treatment for other sufferers. The story of Charlie Gard holds within it a series of flashes of hope, followed by unbelievable heartbreak. A cruel reminder of just how callous our world can be when the legal system is at play. The European Court of Human Rights, and all courts involved, did not only sign Charlie’s death warrant, they did a huge injustice to those struggling to live with and fight MDS.

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About Meko Haze

Meko Haze is an independent journalist by day... and an independent journalist at night.

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