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Hartford Courant: As A Boy Fights A Rare Disease, His Father Faces Deportation

August 14, 2018
In The News

Santiago “Santi” Rodriguez, a 14-year-old New London boy who loves soccer and basketball, is a healthy high school sophomore thanks to research and treatment by the National Institutes of Health.

But the NIH researchers’ effort to learn from the young man and his mother through after his participation in an experimental treatment program is at risk. His father, an immigrant from Colombia, faces deportation, two members of Connecticut’s congressional delegation said Tuesday.

U.S. Rep. Joe Courtney and U.S. Sen. Richard Blumenthal joined Santi’s family, his doctor and others at Connecticut Children’s Medical Center in Hartford in an appeal to the federal Department of Homeland Security to allow Santi’s father, Julian Rodriguez, to remain in the U.S. and for his mother to receive a “national interest” waiver.

Rodriguez request for a stay of deportation is pending, but immigration officials told him to buy an airplane ticket. His flight is scheduled for Sept. 12, said Glenn Formica, the New Haven attorney representing Rodriguez and his wife, Diana Cortes.

The couple came to the U.S. in 2000 seeking asylum from violence in their country. His application was denied in 2009, but he has remained in the country with the permission of immigration authorities as Santi was treated.

The couple’s son suffers from a rare genetic disorder called Chronic Granulomatous Disease, which requires intensive and regular treatment at CCMC. The disease affects one in 200,000 children.

Santi was diagnosed with the disorder at age 6 and has endured as many as a dozen hospitalizations each year, said his physician, Dr. Juan Salazar, the physician-in-chief at CCMC and the head of Department of Pediatrics at the UConn School of Medicine.

The National Institutes of Health was offering an experimental trial for treatment of CGD, and Santi and his family were invited to participate. There was tremendous risk in doing so, Salazar said, because Santi’s immune system had to be suppressed during the trial. An otherwise routine illness could have proved fatal.