Charlie Gard’s Mother: “This Has Been Absolute Hell. We Have No Say in His Life Whatsoever”

International   |   Micaiah Bilger   |   Jul 7, 2017   |   11:31AM   |   London, England

Charlie Gard’s mother spoke out on British TV this week about her son’s condition and the helplessness she feels as a parent.

Charlie is suffering from a rare mitochondrial disease, and his parents want to take him to the United States for an experimental treatment. His case gained international attention as his parents fought a series of court battles for their son, but ultimately lost. Last week, the European Court of Human Rights ruled against his parents’ appeal to take him to the U.S. A British court also ruled that his life support can be removed against his parents’ wishes.

Connie Yates, Charlie’s mother, told Good Morning Britain this week that she does not want her son to suffer; she just wants him to have a chance at life. She said it has been “absolute living hell” to wait and wonder when the hospital might end his life support.

“He’s our own flesh and blood and we don’t even have a say in his life whatsoever,” Yates said. “We are not bad parents, we are there for him all the time, we are completely devoted to him and he’s not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn’t do it.”

Yates said she has done extensive research about her son’s condition. She said she found an experimental drug in the United States that is being used to treat children with mitochondrial diseases, and they hope Charlie could benefit from it.

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She said a U.S. hospital agreed to treat Charlie if they could get him there, and they raised more than $1 million for his treatment. However, the courts have denied them their right to take Charlie to a new hospital.

“There is potential for him to be a completely normal boy but we don’t know because we just don’t know until we try,” Yates told the TV show. “I’ve heard from doctors that there’s around a 10% chance of this working for Charlie so I think that’s a good enough chance to take.”

Later, she added: “I don’t understand it, euthanasia is illegal, suicide is illegal. How is this legal? It’s in his best interests to have a chance at life.”

She also said the hospital put off removing Charlie’s life support after Pope Francis and U.S. President Donald Trump became involved.

“It does give us a hope definitely, because there was no hope left. Charlie was going to die on Friday and, you saw the video we did, we were absolutely devastated,” Yates said. “And then it was going to be on the Monday instead but I think the White House got involved over the weekend and then that changed things.”

Prayers and support for Charlie have been flooding in from across the world, including from Pope Francis and U.S. President Donald Trump. Hundreds of people protested the court ruling in London over the weekend, and another protest is planned for this week.

In October, Charlie entered Great Ormond Street Hospital in London and was diagnosed with a form of mitochondrial disease that causes progressive muscle weakness and brain damage. His parents discovered that 18 people in the United States have been treated with an experimental medication to remedy the rare condition. Reports have not identified the doctor who agreed to treat Charlie, but it was noted that his parents were aware that no cure was promised.

In March, however, Charlie’s doctors recommended that they remove his life support, saying there was nothing more they could do to help him. The little boy suffered brain damage from his disease and cannot breathe on his own.

But Charlie’s parents took the matter to court, and eventually appealed their case to the European Court of Human Rights. Last week, the high court ruled against them and will not permit them to seek alternative treatments for their son, according to The Guardian.

The judges said they did not think Charlie would benefit from the experimental treatment, and it could cause him greater pain and suffering.

On Monday, Charlie’s mother posted a message on Twitter saying that they have not completely given up.

“If he’s still fighting, we’re still fighting!!!” she wrote.