Charlie Gard dies one week shy of first birthday

LONDON (KUSI) — 7/28/2017 — Charlie Gard died Friday after almost a year of fighting for his life.
Charlie suffered from a rare genetic disease, mitochondrial depletion syndrome, that caused brain damage and left him unable to breathe unaided.
His parents fought for the right to take him to the U.S. for an experimental therapy they believed could prolong his life. But Charlie’s doctors at Great Ormond Street Hospital objected, saying the treatment wouldn’t help and might cause him to suffer. The dispute ended up in court.
A judge ruled Thursday that Charlie should be transferred to a hospice and taken off life support after his parents and the hospital that had been treating him failed to agree on an end-of-life plan.

7/18/2017 — Doctors treating 11-month-old Charlie Gard remained unconvinced Tuesday after a U.S. doctor said his experimental therapy could help the child. 

According to The Telegraph, Dr. Michio Hirano — a U.S. neurosurgeon — met with Charlie’s mom, Connie Yates, and medical staff at Great Ormond Street Hospital (GOSH), analyzing Charlie’s brain scans and discussing possible treatment.

Dr. Hirano said his experimental therapy could help treat Charlie, who suffers from a rare genetic disease called mitochondrial DNA depletion syndrome, but the staff remained unmoved, saying Charlie is blind, deaf, unable to move and badly brain damaged, with no hope of recovery.

The Telegraph reports that while the High Court already ruled that Charlie could not be taken from the hospital, they did agree to further examine Dr. Hirano’s claims.

“Our gorgeous baby boy is still stable. We are at his bedside and feel satisfied he is not suffering or in any pain. As Charlie’s loving parents we are doing the right thing for our son in exploring all treatment options," Yates said.

The medical staff at GOSH declined to comment on the doctor’s visit, but instead referred to their previously released statement on the issue.

“It has been and remains the unanimous view of all those caring for charlie at Great Ormond Street that withdrawal of ventilation and palliative care are all that the hospital can offer him consistent with his welfare. That is because in the view of his treating team and all those from whom GOSH obtained second opinions, he has no quality of life and no real prospect of any quality of life.”

The case will be heard again by the High Court on Friday, with further hearings expected next week.

7/10/2017 — The parents of Charlie Gard will be given another chance Thursday to argue their hope of taking the infant to the United States for experimental treatments.

According to CNN, Charlie’s parents have until Wednesday to submit new evidence explaining why taking Charlie to America is the best option for him. 

On Monday, Chris Gard and Connie Yates were instructed by a judge to cite the source of all evidence, when it was produced and how the treatments will help their son.

After leaving court Monday, a family friend read a statement expressing appreciation from Yates and Gard: "Charlie’s parents look forward to the new evidence being heard before the High Court this Thursday 13th July that will result in Charlie’s parents taking him to either the United States of America or to Italy for groundbreaking treatment."

According to CNN, Gard and Yates petitioned the hospital — where Charlie is being treated — with 350,000 signatures from around the world. The petition called for the family to be allowed to treat their son how they see fit, which includes travel to either the U.S. or Italy. 

The hospital has continued to fight back, saying it is in Charlie’s best interest to be taken off life support and be, "allowed to die in dignity." 

"If Charlie is still fighting then they are still fighting," said the parents’ statement.

7/4/2017 — A Vatican-owned pediatric hospital in Rome Tuesday offered to take 10-month-old Charlie Gard into their care as his parents continue to fight against the Great Ormond Street Hospital in London.

Mariella Enoc, president of the Vatican’s Bambino Gesu Children’s Hospital, released a statement asking the director of the London hospital, where Charlie is staying, "to verify whether the health conditions exist to possibly transfer Charlie to our hospital."

"We know that this is a desperate case and, apparently, there is no effective therapy," Enoc said.

According to CNN, Enoc contacted the hospital in London about transferring Charlie. Enoc said the hospital was very kind about the situation but confirmed that for legal reasons, Charlie could not be moved.

"The domestic courts concluded that it would be lawful for the hospital to withdraw life-sustaining treatment because it was likely that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit," the court said in a news release.

CNN reports Charlie is expected to be taken off life support on Friday. 

7/3/2017 — An infant dying in a London hospital has grabbed the attention of two of the world’s most powerful men: President Donald Trump and Pope Francis.

Charlie Gard has taken the social media world by storm over the past week as his parents — Chris Gard and Connie Yates — fight for the right to take their terminally ill child to the United States for an experimental treatment, which doctors say won’t help. 

Baby Charlie has a rare genetic disease called mitochondrial DNA depletion syndrome and last week, the European Court of Human Rights ruled that the hospital can take him off life support.

Charlie’s parents disagree and want the hospital to release him into their custody. They argue they have the right to exhaust all options to save their child, while doctors say it would be “inhuman” to allow the baby be put in a “condition of existence."

According to CNN, mitochondrial DNA depletion syndrome is caused by a genetic mutation, which leads to weakened muscles and organ dysfunction. It’s a poor prognosis for most patients. 

Charlie has been in the intensive care unit at the Great Ormond Street Hospital for Children in London since October 2016.

Charlie’s parents appealed to the UK Supreme Court, pleading to allow them to decide what’s best for their child. When they lost that appeal, Charlie was expected to be taken off life support at end of day June 13, but the deadline was extended to allow the parents more time to say goodbye. 

CNN reports that Charlie’s parents then filed a request with the European Court of Human Rights, but they too ruled in favor of his doctors. 

"We are utterly heartbroken spending our last precious hours with our baby boy … We’re not allowed to choose if our son lives and we’re not allowed to choose when or where Charlie dies … We, and most importantly Charlie, have been massively let down throughout this whole process," wrote Chris and Connie, following a video they posted on YouTube explaining the situation. 

On Sunday, Pope Francis said Charlie’s parents "should be allowed to accompany and treat their child until the end."

"The Holy Father is following with affection and emotion the situation of little Charlie Gard and expresses his closeness to his parents. He is praying for them, in the hope that their desire to accompany and care for their own child until the end will be respected," the director of the Holy See Press Office, Greg Burke, said in a statement Sunday.

Monday morning, President Trump also took to social media, sharing his support for Charlie and his family.

Helen Ferre, director of media affairs at the White House, said Monday, "Upon learning of baby Charlie Gard’s situation, President Trump has offered to help the family in this heartbreaking situation. Although the President himself has not spoken to the family, he does not want to pressure them in any way, members of the administration have spoken to the family in calls facilitated by the British government. The President is just trying to be helpful if at all possible."

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