There are two updates in Charlie Gard’s story, and both offer a glimmer of hope for the infant and his family.
Charlie, now 11 months old, was born with a rare form of mitochondrial depletion syndrome, a genetic disease that has left him severely brain damaged. Doctors at Great Ormond Street Hospital in London say he can’t see, hear, move, or cry. The baby has been a patient at the hospital since he was just two months old.
His parents have been locked into a battle over their son’s fate with doctors and British courts, who say the infant should be taken off support and allowed to die.
But Chris Gard and Connie Yates have never given up hope for their son, and after nine months of fighting for the right to make healthcare decisions for their child, the family has finally gotten some good news.
A US Congressional committee has voted in favor of giving baby Charlie and his parents permanent residency so the child can undergo experimental treatment in the country.
An amendment to grant the family residency was passed unanimously in the House Committee on Appropriations on Tuesday, according to Congresswoman Jaime Herrera Beutler, who introduced the amendment. But it would need a vote from the full House and the Senate to become law, reports Fox 8.
Herrera Beutler – whose own daughter was born with a rare and usually fatal disease but survived after treatment – said that the committee had “an incredible opportunity” to help Charlie Gard.
“This amendment would speed up the process, cut through the bureaucratic red tape, and ease the path for Charlie to be able to receive medical treatment in the US that his parents and medical specialists believe is worth pursuing,” she said in a statement.
Dr. Michio Hirano, a neurologist from Columbia University whose research focuses on mitochondrial diseases and genetic myopathies, has offered to provide experimental treatment to Charlie.
Connie Yates describes the treatment on her GoFundMe campaign page:
Charlie’s condition is caused by a disruption in the mitochondria, the part of the cell that provides energy to his muscles, kidneys and brain. There is a new treatment available which is a nucleoside bypass therapy, which could potentially repair Charlie’s mtDNA and help it synthase again by giving him the naturally occurring compounds that his body isn’t able to produce. It’s oral medication so nothing invasive or harmful.
Dr. Hirano is developing the experimental therapy, which has been used on at least one American patient with a similar but less severe mitochondrial disease.
At a June meeting in Virginia, Dr. Hirano said that 18 patients, most of them in Spain and Italy, are receiving nucleoside bypass therapy, reports STAT. Nucleoside therapy “seems to be safe and well-tolerated,” said Charles Mohan Jr., CEO of the United Mitochondrial Disease Foundation, a patient advocacy group that funds research and which organized the Alexandria meeting.
Testifying by video from the US last Thursday, Dr. Hirano told UK High Court Justice Nicholas Francis that he did not think Charlie necessarily had brain damage and that he believed there was an “11% to 56% chance of clinically meaningful improvement” to the baby’s muscular function if treatment were pursued.
Dr. Hirano flew to London to examine Charlie this Monday, and to try to convince the baby’s doctors to allow him to travel to the US for treatment.
Gard’s family raised over £1,339,027 (1,745,336.86 in USD) in donations via a GoFundMe campaign for their son to pay for this treatment in the US.
Despite this, several British courts have ordered the infant be removed from support and allowed to “die with dignity.”
Charlie has survived three decisions to withdraw his ventilator, but was saved each time by appeals by his parents and interventions from Pope Francis and Donald Trump.
An American family whose son has a disorder similar to Charlie’s has spoken out in support for the baby, reports Fox 8:
Arthur Estopinan said his son, Arturo, was diagnosed with the same rare disease that Charlie has, mitochondrial DNA depletion syndrome, when he was 1 — though Arturo’s is said to be a less severe variation of the disease. The disease causes muscle weakness and loss of motor skills, which means standing, walking, eating, talking or even breathing is almost impossible.
Arturo was born in 2011. Estopinan was initially told by doctors that his son would die a few months after his diagnosis and that there was no medical treatment for his condition.
Estopinan said he was motivated to speak out about his son’s disease and treatment after hearing about Charlie’s situation:
He was the one who connected Charlie’s parents to Hirano last year. After attending a conference in the Netherlands where he talked about Arturo’s condition, Estopinan also recently met with Charlie and his parents in London.
“I was there for three days. We prayed every day with his parents. They’re really strong people,” he said.
The Estopinans shared their story and support for Charlie in an interview with ABC News.
Dr. Hirano and six fellow experts wrote to GOSH offering “new evidence”, and the High Court reconvened, reports the Daily Mail.
Now, little Charlie’s parents await the court’s decision, which is expected to be given by July 25.
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Contributed by Lily Dane of The Daily Sheeple.
Lily Dane is a staff writer for The Daily Sheeple. Her goal is to help people to “Wake the Flock Up!”