The European Court of Human Rights approved yesterday the decision of the British Justice of offer a dignified death to a 10 month old baby who suffers from an incurable and deadly genetic disease.
The decision of the Court goes against that of the baby's parents, who wanted to submit their son to experimental treatment in the United States, although the hospital where he is admitted did not recommend it.
His parents were looking for a last chance in the United States
Charlie is a 10 month old baby who suffers a rare and fatal genetic disease called "mitochondrial depletion syndrome," which causes progressive weakening of muscles, lungs and other organs, as well as brain damage.
The baby has been admitted to the London hospital "Great Ormond Street Hospital" since October of last year, connected to a respirator and receiving food and drink through a tube.
Although doctors informed parents that Charlie's illness is incurable, they wanted to give their son one last chance by taking him to the United States for experimental treatment.
When the baby was seven months old, the parents started a fundraising campaign through the Internet, in which more than 80,000 people turned to the British couple, managing to raise almost a million and a half euros.
According to the BBC, British doctors who care for the child, say that he cannot hear, move, cry or swallow and that his lungs only work because he is connected to a machine.
This led the hospital to go to the local courts to request the withdrawal of mechanical ventilation and the application of palliative care, claiming the suffering that the little one was going through.
British Justice proved the hospital right, taking refuge in that prolonging the life of the baby would mean increasing his suffering and that no experimental treatment would help him.
The judge in charge of the case, Nicholas Francis, has explained that the decision to give the baby a dignified death has been made "with the greatest sadness" but with "the absolute conviction" of doing the best for Charlie.
"It is never easy when the medical and judicial opinion goes against the wishes of the parents, but our first responsibility as a hospital is to make the rights of the child prevail" - commented hospital sources.
But Charlie's parents decided to continue their fight and raised their appeal to the European Court of Human Rights (TDEH), claiming that the British authorities had violated their right to life.
Charlie must be "disconnected"
The parents' appeal to the Strasbourg Court came on June 6 and while they were awaiting sentencing, Charlie's mother, Connie Yates, posted on her Facebook profile the picture of your baby with your eyes open and a hopeful message:
"A photo is worth a thousand words. The sentence says that it is not able to open your eyes enough to see"
Initially, the European Court of Human Rights ordered the hospital in London where the child is admitted, provisionally suspend the judicial decision and keep Charlie alive until he thoroughly studied his caseNumerous experts participated in that study and ended up ruling that "there are no chances of success"With the experimental treatment proposed by the parents and that Charlie" is exposed to continuous pain and suffering. "
Thus, the Court of Strasbourg made public yesterday the ruling authorizing remove the mechanical support that keeps Charlie alive, thus dismissing the appeal filed by the parents and giving the reason both to the hospital and to the British courts.
The opinion of the Strasbourg Court is already final and does not admit any recourse, so parents should say goodbye to their baby, who will be disconnected from the machines that keep him alive in the coming days.
An incurable genetic disease
Charlie was born in August of last year apparently healthy, but his health began to suffer from the second month of life, according to his mother on the page they opened to raise funds.
With three months, the little boy was diagnosed with a rare disease called "mitochondrial depletion syndrome," a genetic ailment that only affects 16 people worldwide and that in Charlie's case it is caused by a defective gene that both his father and his mother were carriers without knowing it.
From the diagnosis, the baby began to weaken and need mechanical support to breathe, at which time the parents they began to investigate a possible cure for your son.
When they opened the page they explained, hopefully, that they had found in the United States an experimental medication that could help them, as well as a doctor who had agreed to treat him in his hospital.
But in order to move Charlie they needed to raise funds and invited people to support them under the hashtag #charliesfight and #charliesarmy.
"We know that rare diseases do not receive enough research funding, but why should it be a reason for a child to die? He is here now and this treatment could help, not only our baby, but other children in a future "- explained Charlie's mother.
"We need to change things and show how some parents can forge a path for other families that encounter similar obstacles. We need to find treatments for incurable diseases. We have to give hope to other people."
But The agonizing struggle of these parents to try to save their son has already come to an end and in the next few days they will have to accept the death of little Charlie who will be disconnected from the machines that keep him alive today.
Via The Telegraph, BBC
