Jaime Herrera Beutler’s Amendment Offers U.S. Residency to Terminally-Ill Infant on Life Support & His Parents

Today, U.S. Congresswoman Jaime Herrera Beutler’s amendment to give lawful, permanent U.S. residency to a British infant on life support with a rare genetic condition unanimously passed in the U.S. House Appropriations Committee’s Homeland Security bill. This amendment would give the baby, Charlie Gard, and his parents U.S. residency so he can receive experimental medical treatment that a U.S. doctor believes could save his life.

Eleven-month-old Charlie suffers from the rare genetic condition called mitochondrial DNA depletion syndrome (MDDS), which causes progressive muscle weakness and brain damage. He is currently on life support and his doctors said he will die from his illness.

“Parents have the most at stake when it comes to standing up for their children and right now, we have an incredible opportunity to stand with a family and save a child’s life,” said Jaime. “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 U.S. that his parents and medical specialists believe is worth pursuing.”

Since November of last year, Charlie’s parents have been requesting specialized treatment that could improve Charlie’s condition. However, London’s Great Ormond Street Hospital, where Charlie has been receiving treatment, planned to remove Charlie’s life support, arguing that the experimental treatment would only prolong the baby’s suffering.

Charlie’s parents have raised at least $1.8 million to come to the U.S. to receive treatment from doctors who are specialized in MDDS. However, the Family Division of Britain’s High Court denied his parents’ request to travel to the U.S. for the experimental treatment. Jaime’s amendment would allow the Gard family to move to the U.S. for as long as necessary so Charlie can receive experimental medical treatment from Doctor Michio Hirano, a professor of neurology at New York’s Columbia University Medical Center and chief at the Division of Neuromuscular Disorders. Dr. Hirano has testified this treatment could improve Charlie’s life by up to 50%.

The next step for Jaime’s amendment will be a vote on the House floor.