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US Lawmakers Vote to Grant Charlie Gard and Family Permanent Residency “to Fly to America for Treatment”

Danielle Dent-Breen's picture
Charlie Gard Granted Permanent US Residence

Charlie Gard has had a busy week. In the latest development in his ongoing legal battle, US lawmakers have voted to grant Lawful Permanent Resident status to Charlie and his family to allow him “to fly to America for treatment”.


Granted Lawful Permanent Residency

Charlie Gard, the 11-month-old baby in the middle of a prolonged legal battle in the UK has been granted Lawful Permanent Residence (LPR) in the United States. On Wednesday, members of the US House Appropriations Committee voted to approve an amendment that would grant Charlie and his family LPR status so that he can pursue medical treatment in the United States.

People with LPR status are commonly known in the US as “greencard holders”, based on the color of the old-style cards that were issued to people with LPR status in years past. A person with LPR status is legally able to reside in the United States, work, and pay taxes, with many of the same benefits granted to US citizens, and provides a path to eventual citizenship, should they choose to pursue it. The amendment was reportedly attached to a controversial House appropriations bill that in part, provides money for funding President Donald Trump’s border wall and enhanced immigration enforcement. It could take some time to see this bill in its entirety approved, as it still needs to face vote approval of the full House and the Senate. However, lawmakers stress that this is the fastest way to avoid red tape in Charlie’s case, and ensure his security in the US. Lawmakers are hopeful that this decision will oblige Great Ormond Street Hospital (GOSH) to release Charlie to his parents’ custody so that he can fly to the US to pursue treatment for his condition.

Background on Charlie Gard

Charlie was born with a rare, progressive genetic disease, and has been kept on life support at GOSH for months, as the legal battle for his life and care has raged on. The courts have ruled that the hospital has the right to remove life support and allow Charlie to die, but his parents continue to argue that they should have the right to pursue experimental treatment in the United States. Late last week, High Court Judge Nicholas Francis agreed to re-hear arguments in the case as several doctors came forward with as yet unpublished medical studies showing a promising treatment for Charlie’s condition. The judge ruled that a US neurologist, Dr. Michio Hirano, MD, who has developed this treatment, called nucleoside bypass therapy, would be allowed to travel to the UK and examine Charlie personally. The doctor examined Charlie and thoroughly reviewed his medical records on Monday and Tuesday of this week. A court order prevents any participant in these meetings from discussing what has taken place with the media. Dr. Hirano is due to report to Judge Francis this week, and after hearing Hirano's assessment, Francis expects to make a final court decision by July 25.

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The treatment has been successful before

On Wednesday, the American father of a child with the same syndrome as Charlie, who has undergone Dr. Hirano’s nucleoside bypass therapy treatment spoke out in favor of Charlie’s parents. Arthur Estopinan said his son, Arturo, was diagnosed with the same rare mitochondrial DNA depletion syndrome that Charlie has, when he was 1 year old. The disease causes progressive muscle weakness and loss of motor skills. Arturo was born in 2011, and 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, but Estopinan and his wife, Olga, were determined to do something.

"I started calling all of the doctors I could, from Harvard to Stanford and everyone in between, Ohio, and all of the major pediatric medical centers," Estopinan said. "Eventually, the last one was Dr. Hirano in New York City. I was this close to telling my wife, 'there's nothing we can do.' Thank God, Dr. Hirano said, 'we're doing a clinical protocol, and we believe these medications will help your son.' "

Arturo’s father said the treatments have helped the boy regain muscle function.

"They have allowed him to get stronger by moving his arms, his fingers, his legs. He's even trying to move his hips," Estopinan said. "The other day, I put one of these new songs from 'Sing,' from the Disney movie, on, and he started to move his hip and stomach. He's definitely willing to dance, God willing, very soon."

Estopinan was moved to speak out about his son's disease and treatment after hearing about Charlie's situation. He claims that 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 had a chance recently to meet 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.

Although Estopinan recognizes that he is not a medical doctor, and he cannot be certain that the treatment would work for Charlie, he emphasized his support for Charlie's parents, and insists they should be given the chance to try the treatment.

"This little boy needs his experimental medications," he said. "We're wasting time. Time is ticking, and time is not on Charlie's side."