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.
“His family was very brave, Santiago was very brave, and he accepted the therapy,” Salazar said. “And they went down to NIH, the wonderful National Institutes of Health, and guess what? The therapy was successful.”
Santi still undergoes treatment at CCMC and visits the NIH twice a year, Salazar said. Researchers continue to learn about CGD from Santi and his mother, who is a carrier of the disease, Salazar said.
“There are many other kids who could be born with this defect,” Salazar said. “As we follow Santiago over his lifetime we’re going to be able to understand how this stem cell therapy works, how long does it work, do we need to change therapy over time and how will it benefit children. It is very important for Santiago to remain under our care, under the care of the National Institutes of Health so we can actually understand more about this disease and hopefully lead to additional cures for other children.”
Salazar said the knowledge researchers gain from Santi and his mother could mean earlier treatment for children born with the disorder. That is why Diana Cortes has applied for the national interest waiver, Formica said.
CCMC’s president and CEO, James Shmerling, said the care a patient receives from his or her family is as critical as the care provided by doctors, nurses and others. The hospital is an advocate and a voice for children, he said.
Blumenthal said Julian Rodriguez’s case is unique because of Santi’s status. “The whole nation will benefit because it will allow the National Institutes of Health to study the condition,” Blumenthal said. “I’m not a scientist. I’m not a doctor. But common sense tells me keeping Santi here is in our national interest.”
Courtney said the law does not require Julian Rodriguez to leave the country because he has been granted waivers in the past because of Santi’s medical condition. All that is needed is another waiver, he said.
“We’re in this moment where the contradictions just scream out in this case,” Courtney said. “We’ve got one arm of government that is providing absolute cutting edge, 21st century medical care and technology. It is American at its best. And then we have another arm of government that is actually disrupting the delivery of that … really ground-breaking research that will benefit many kids in the future. We just cannot allow that contradiction to stand.”
Santi thanked all who spoke and who joined him at CCMC Tuesday, and said he fears his family will be split up.
“I don’t know what I would do … without my dad,” Santi said. “He’s helped me do so much during my life.”
Santi said his father is a hard-working man who pays his taxes, goes to work and plays by the rules. He even drives the speed limit, Santi said.
“I just want to say please do not take him away from me,” Santi said. “He’s done everything correctly. He’s never done anything bad, so I don’t understand why a good person like my dad should be separated from his family.”
Formica, the immigration lawyer, said he’s not sure what the family is going to do if Julian Rodriguez is deported.
“They’re going to lose a lot of dignity,” he said. “There’s going to be a lot of pain.”
He’s the family bread-winner, has been a contributing member of society and has never sought public assistance for himself or his wife, Formica said. “He’s worked, because as part of the stay request he had work authorization,” Formica said. “He paid his taxes. His wife works. And he’s been a great father.”