West Long Branch Foundation Brings Muscular Dystrophy Youngster To U.S. For Treatment

Source: Central Jersey.com

It’s not easy to get a child with a fatal illness into the United States for medical treatment, especially during COVID-19. But it’s not impossible.

Alfie Pentony, 7, lives in Northern Ireland with his parents, Colleen and Jamie and two brothers. At the age of 4, Alfie was diagnosed with the very rare and always-fatal muscle-wasting disease Duchenne Muscular Dystrophy. According to a press release from the JAR of Hope Foundation, victims of Duchenne are in wheelchairs by their teens and in graves after suffocating to death roughly a decade later.

Alfie is participating in a year-long study called Operation Lifeline, conducted by the Salerno Center for Complementary Medicine in New York City, and sponsored by the JAR Of Hope of West Long Branch, which raises funds to research a cure for Duchenne.

“This is a very promising study and we were determined to get Alfie here for the next phase,” said Jim Raffone of JAR Of Hope, who, with his wife Karen, founded the organization in 2014 after their now 10-year-old son James Anthony was diagnosed with Duchenne.

Because of COVID-19, Alfie and his dad were initially denied entry into the United States for this month’s tests, according to the press release.“I began hitting the phone — to Congressman Chris Smith of New Jersey; Dr. John Salerno of the Salerno Center; and Patrick Smith and Tom Lantos of Congress’ Human Rights Commission,” Raffone said. Smith, the Commission’s legal counsel, was able to connect with the U.S. State Department and the American Embassy in Ireland.

In Operation Lifeline, four boys with Duchenne receive infusions of a chemical compound called JAR914 every three months and their muscle strength is measured before and after the treatment. The results have been very encouraging, according to the press release.

“We had brought Alfie here every three months for the treatments since last October,” Alfie’s dad Jamie said. “But to get him here now we needed extra assistance, and JAR of Hope was really there for us. I don’t think we could have gotten Alfie here without them.”

Only weeks before the current phase of Operation Lifeline, Jamie and Alfie Pentony received permission to come to the United States, and Alfie is undergoing the infusions right now.

“This is a ground-breaking study,” Raffone said. “For the first time, we are seeing results that may actually prolong the lives of kids with Duchenne — and maybe even lead to a cure. So when Alfie’s parents contacted us, we vowed we would not stop until we got him here.”

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