Charlie Gard’s Parents Devastated After His Death: “We Should be Planning His 1st Birthday, Not His Funeral”

International   |   Micaiah Bilger   |   Jul 31, 2017   |   9:49AM   |   London, England

Charlie Gard would have turned 1 year old on Friday.

But this week, his parents are planning his funeral. The British infant died Friday after his life support was removed, following a lengthy court battle between his parents and hospital.

Charlie suffered from a rare mitochondrial disease and brain damage. He was at the center of a massive international debate after the hospital where he was receiving treatment refused to allow an experimental treatment to help him and also refused to transfer him to another hospital that would allow the treatment.

Charlie’s parents took their fight to numerous courts to protect his life but to no avail. The courts argued that it was in Charlie’s best interest to be removed from life support.

After Charlie’s death, his parents Chris Gard and Connie Yates spent the weekend mourning with their family, according to The Sun.

“We should be planning Charlie’s first birthday but instead we’re planning his funeral,” his mother said.

Fox News reports the family has not finalized funeral plans yet, but they did decide that he will be buried with his toy monkeys – beloved stuffed animals that he and his parents often were seen holding.

His parents are expected to register his death today, the report states.

On Friday, his parents announced Charlie’s death, saying, “Our beautiful little boy has gone, we are so proud of you Charlie.”

On July 24, Connie Yates and Chris Gard decided to end the legal battle to get their son experimental treatment. Based on new evidence, the couple said Charlie’s condition had deteriorated too much and there no longer was any hope of the experimental treatment working.

Their final request to a judge last week was to be allowed to take Charlie home to die. However, on Thursday, a judge ruled that Charlie would be moved to hospice and his life support would be removed. The baby boy was not allowed to go home, as his parents wished.

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On Friday, the news broke that Charlie had died after his life support was removed. Leading pro-life advocates mourned Charlie’s deathsaying it is a very concerning harbinger of things to come.

Charlie’s parents have long expressed the desire to be allowed to take him home to die. However, their first choice was to take Charlie to the United States for an experimental treatment. They raised more than $1.5 million for his medical care. The family said that money now will go to charity.

His parents said they knew the chance of the experimental treatment working was slim, but they wanted to try anyway for Charlie’s sake.

However, the courts and hospital refused to allow them to transfer their son to another hospital. About a month ago, the European Court of Human Rights ruled that the hospital can remove Charlie’s life support and allow him to die.

Questions remain about whether Charlie could have benefited from the experimental treatment, had it not been delayed for months during the legal battle between Charlie’s parents and the hospital. The court battle began in March.

U.S. neurologist Dr. Michio Hirano, an expert in the field, previously said Charlie had an 11 percent to 56 percent chance of benefiting from the experimental treatment. However, when Hirano and a group of doctors examined Charlie two weeks ago, they said he no longer had a chance of benefiting from the treatment.

After that, Charlie’s parents’ last request was to take Charlie home to die, but it also was denied.

We promised Charlie every day we would take him home. It seems really upsetting, after everything we’ve been through, to deny us this,” his mother said.

The hospital opposed the parents’ request. Its lawyers argued that Charlie needs to stay at the hospital or go to a hospice facility until he dies. Doctors claimed his ventilator will not fit through the door of his parents’ home, and he could suffer a painful death.

Despite all of his problems, Charlie’s parents – and millions like them – believe that Charlie is a valuable, living human being who should be given a chance to live.

Leading pro-life advocates helped Charlie’s parents fight for his life. Pope Francis and President Donald Trump also expressed support for the sick infant.

Charlie’s parents brought Terri Schiavo’s brother Bobby Schindler to London to help them fight for care for their son. Schindler spoke with LifeNews exclusively about their invitation.

Schindler told LifeNews: “The critical issue here is not a political one, but the simple notion that families know what is best for their loved ones.

“Charlie’s situation is very reminiscent of my family’s battle to save my sister, Terri. Hopefully being here can help his parents, Connie and Charlie, deal with the day-to-day emotional roller coaster, as they fight for their son’s right to live,” Schindler added.