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US Lawmakers passed an amendment yesterday granting permanent residence status to the terminally ill Charlie Gard and his parents should a UK court allow the family to travel to the US to pursue experimental therapy.
The Hill is reporting on the amendment sponsored by Rep. Jeff Fortenberry (R-NE) which will enable the Gard family to live in the US while pursuing treatment for 11 month-old Charlie who is suffering from a rare form of mitochondrial depletion syndrome.
Charlie’s parents, Connie Yates and Chris Gard, are in the middle of a high profile legal battle to win the right to have their child released from The Great Ormond Street Hospital in London where caregivers say he has no chance of recovery.
UK and European courts have determined that the hospital has the right to discontinue the boy’s life support. This is based on British law which puts the rights of the patient over the wishes of parents if doctors disagree; for example, in cases where children are given treatments despite religious objections from parents.
Yates and Gard fought these rulings all the way to the European Court of Human Rights to no avail.
However, the case took a turn last week when a US physician and researchers at the Vatican’s Bambino Jesus pediatric hospital provided new evidence in support of allowing Charlie to receive an experimental treatment called nucleoside therapy.
The hospital agreed to bring this new evidence before a judge who ruled that the US physician, Dr. Michio Hirano, a neurologist from Columbia University Medical Center, could come to the UK to examine Charlie and determine if this experimental therapy has any chance of working.
This examination took place earlier this week.
According to the Daily Mail, Connie Yates revealed last night that Charlie was going to undergo more tests which could determine if he is fit to undergo experimental treatment.
“Our gorgeous baby boy is still stable. We are at his bedside and feel satisfied he is not suffering or in any pain,” she said. “As Charlie’s loving parents, we are doing the right thing for our son in exploring all treatment options.”
She also revealed a photo of the baby, taken on Friday evening, showing him with his eyes open and appearing to watch a toy. Yates said the photo is evidence that the hospital is wrong in not allowing her son to receive further treatment.
If the hospital does rule that Charlie can come to the U.S. for treatment, the family would still need permission from the judge to do so. Until that permission is granted, any travel to the US could be considered illegal.
However, once that permission is granted, having the US residency status in place will certainly speed up the process of getting further treatment for this desperately ill little boy.
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