During the last weeks we have followed a struggle that has everyone moved: to give little Charlie Gard a chance to travel to the United States to receive experimental treatment.
But this Monday after hearing the opinion of Michio Hirano, the doctor who would do the treatment, his parents decided to end the legal battle and allow his son to die with dignity.
A fight that moved the world
Charlie was born healthy, but when he was three months old he was diagnosed mitochondrial DNA depletion syndrome, a genetic disease that only 16 people in the world suffer that caused brain damage, and for which, so far, there is no cure. He has been admitted to the Great Ormond Street hospital in London since October of last year, connected to a respirator and receiving food through a tube.
The hospital went to the local courts to request the withdrawal of mechanical ventilation and the application of palliative care, alleging the suffering that the child was going through. The British Justice gave the reason to the hospital, against the desire of the parents; on June 28, the British Courts ordered the withdrawal of life support for the baby, to offer him, according to justice, a "dignified death" rather than subject him to a treatment of unpredictable consequences.
The parents argued that the baby's brain damage might not be irreversible and that he deserved a chance.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.
Since then, Connie Yates and Chris Gard, the baby's parents were struggling to take Charlie to the United States, where he could undergo an experimental treatment It has been used for patients with similar diseases quite successfully.
The case was sounded throughout the world and personalities such as Pope Francis or Donald Trump joined the struggle of the parents so that Charlie was given one last chance. Experts and scientists, including doctors from the Vall d'Hebron hospital in Barcelona, also sent a letter to the London hospital getting the baby's disconnection stopped.
Parents were given 48 hours to present evidence that experimental treatment could help Charlie and get the transfer reconsidered to receive treatment in the United States.
It was already too late
Although in a letter addressed to the London hospital Ramón Martí, head of the group of neuromuscular and mitochondrial pathology of the Institut de Recerca del Vall d'Hebron, expressed that there was a possibility that the treatment would work, after a final evaluation by the doctors, they realized that it was too late for the little one.
A judge extended the invitation to Dr. Hirano, co-Director of the Muscular Dystrophy Association clinic at the Columbia University Medical Center and professor of neurology at Columbia University in New York, as well as a doctor from the Bambino Gesu hospital in Rome, to evaluate the medical condition and the chances that Charlie could receive medical treatment.
After the assessment of Dr. Hirano, who would do the experimental treatment, Charlie's parents decided not to move forward with the legal battle and stop the suffering of their son. Chris commented that after the doctors evaluation, perhaps if your child had received the treatment as a child he would have had a chance.
According to information from the BBC, the lawyer representing Charlie's parents, told the Supreme Court of England that "the time was running out" to the little one.
The parents had collected 1,331,940 pounds (1,510,000 euros). They had exceeded the target of 1,300,000 pounds they needed to start the treatment. Now that money will be used to give palliative care and be allowed to have a death with dignity.
"We will let you go and be with the angels"
At a press conference, Chris Gard and Connie Yates read a document explaining their reasons for ending the legal battle:
"This is one of the most difficult things we have had to say and we are about to do one of the most difficult things we have had to do."said Chris Gard, reading the sheets in his hands.
He commented that they had decided to let him go and "be with the angels." "Our son is an absolute warrior. We will miss him very much".
The complete statement they read to the media was published on Connie's Facebook, and they comment that from now on they will fight to protect and help the families of sick children, so that Charlie's life life has not been in vain.
