Roller coaster ride for parents continues

Roller coaster ride for parents continues

A court in Britain must decide again whether terminally ill Charlie can be treated with experimental therapy. His parents hope for a miracle. A new court decision is still pending.

They had already said goodbye to their son, and now hope is rising again. Parents of terminally ill British baby Charlie Gard go through roller coaster of emotions. For months they have been hoping that Charlie could be brought to the USA for experimental therapy.

In court again

They already lost with their wish through all instances. But now the case of the eleven-month-old boy is to be reopened. New expert testimony, based on previously unpublished study results, gives Charlie a ten percent chance of treatment success, according to his mother. "I hope that my son will get this chance," says mother Connie Yates in a BBC interview on Monday. "He has nothing to lose," she believes.

The doctors who have treated Charlie so far are of a different opinion. They don't believe Charlie can be helped anymore. He suffers from a rare genetic disorder, known in the trade as mitochondrial DNA depletion syndrome (MDDS), affecting the brain in particular. Charlie must be artificially ventilated and fed.

His doctors want to prevent him from suffering and advocate letting him die. The brain damage Charlie has already suffered, in their opinion, is no longer curable. Whether Charlie is in pain is unclear. He cannot move or communicate. His condition can hardly get better, according to doctors.

At a first hearing on Monday, the judge in charge of the case appeared open. "There is no one who didn't want to save Charlie," he said. However, "dramatic and new" facts needed to reverse earlier decisions, they say.

Parents' hopes revive

Charlie's parents cling to last bit of hope to save their son's life. They raised the equivalent of about 1.5 million euros in donations to make treatment in the U.S. possible. When they also failed in the last instance before the European Court of Human Rights, all hope seemed lost. Sobbing, they bring their supporters up to date. "We can't even take our own son home to die," Father Chris Gard said in a video message, his voice quivering.

But then things start to move again. Pope Francis says he prays for the parents and hopes their wish to accompany Charlie will not be ignored. U.S. President Donald Trump writes on Twitter: "If we can help little Charlie Gard, (…), we would be very pleased to have." Charlie's mother is sure that only the public attention has made the renewed hearing in court possible. A decision could be made as early as this week.

Healing success unlikely

Markus Schulke, a pediatrician and researcher on congenital developmental disorders of the nervous system at Berlin's Charite hospital, is not very optimistic about the life expectancy of children like Charlie with the disease. "The problem is that once damage to the brain has occurred, it is extremely unlikely that it will recover," Schulke told Deutsche Presse-Agentur. This also applies in the equally improbable case of a successful experimental therapy.

Could Charlie perhaps have been helped by starting therapy earlier? Schulke is skeptical. As he explains, in patients like the little boy, doctors can so far only try to alleviate the symptoms – they can't yet get to the root of the disease, the genetic defect. Charlie's parents still hope for a miracle.

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