Connecticut teen with rare disease faces father’s possible deportation
HARTFORD — It is a miracle the Santi Rodriguez is alive.
Now the 14-year-old, who has suffered from a rare genetic disease that is currently under control, is looking for a second miracle.
His father, Julian Rodriguez, who came here 18 years ago from Colombia seeking asylum, has been granted multiple stays to remain in the country to support his son and wife, both of whom are part of a National Institutes of Health study on the serious autoimmune disease that affected their son.
In June however, the elder Rodriguez, who lives in New London, was told by Immigration and Custom Enforcement to buy a one-way ticket to Colombia by Sept. 12.
Attorney Glenn Formica, who was joined by several elected and hospital officials at a press conference at Connecticut’s Children Medical Center Tuesday, said he has filed a national interest waiver, which is a special petition that allows an immigrant to stay in this country, if it is in the national interest.
In the meantime, until the petition is acted on, Formica is asking ICE to continue granting his client a stay to remain here, something that Rodriguez has gotten for the past nine years.
Santi was born with chronic granulomatous disease, a serious autoimmune ailment that was transmitted through a defective gene carried by his mother. The rare malady only affects males.
James Shmerling, head of the hospital, said integral to the Santi’s care team for more than a decade “is the family ... They are critically important to everything we do.”
Dr. Juan Salazar, the pediatrician in chief at Connecticut’s Children Medical Center, said this is a “story of hope, a story of success and a story that will lead to great outcomes for this family.”
He said he came up with the diagnosis of CGD — which affects only one child in 200,000 — when Santi was 6 years old. While some children with CGD reach adulthood, “it is universally fatal,” he said.
It effects white cells that fight infection. Children with CGD will develop serious infections and Santi did over his short life, bouts that put him in the hospital eight to 10 times a year.
Lucky for the teen, who is a rising sophomore at St. Bernard School in Uncasville, there was an experimental trial being offered by the NIH that involved stem cell transplantation.
Salazar said a colleague of his, Dr. Harry Malech at the NIH, invited Santi to participate in the trial — an opportunity his parents accepted despite the risks of further suppressing their child’s immune system so the new cells could take.
The therapy was successful starting six years ago and all of the teen’s complications have mostly subsided, while the infections have also gone away, according to Salazar.
“You can imagine the stress this would have put on any parent. The good news is that Santi currently does not require immunosuppressant therapy, which is unusual,” the doctor said.
He said in his opinion that is a miracle, but it is important that he continues to report to the Connecticut Children’s Medical Center every two to three months, or sooner, if needed, and to the NIH every six months.
“His care needs to be done in the United States. It cannot be done elsewhere. It is something that has contributed to the overall healthcare of children,” Salazar said, as the speakers put forward their arguments to keep Julian Rodriguez, the family’s main breadwinner, here.
U.S. Sen. Richard Blumenthal, D-Conn., said this story is like countless others he has seen, where children are separated from their parents.
He said the new deportation policy in the U.S. is to send away people who have been here for decades, worked hard and pay their taxes as they are raising their families.
Blumemthal said it makes him “ashamed and embarrassed as a citizen, as a parent and as a public official.”
He praised Formica and other lawyers who defend these clients with little compensation.
U.S. Rep. Joe Courtney, D-4, said Santi’s diagnosis could have easily been missed except for the great clinicians at the hospital.
“Having Santi’s dad leave the country is not required by law,” Courtney said, pointing to the ICE decision for the past nine years that allowed him to stay.
He said the handling of immigration cases is now subject to a radically different approach. Courtney said the government’s policy should be to “leave kids alone” as the country looks for consensus.
“We are in this moment where the contradictions just scream out. We have one arm of government providing absolute cutting edge 21st century medical care and technology. It is America at its best. And then we have another arm of government that is actually disrupting the delivery of that type of really ground-breaking research that will benefit many kids in the future,” Courtney said.
Santi also stepped up to the microphone.
“Please don’t let my family be split apart. I don’t know what I would be doing here without my dad. He has helped me so much through by life. He has always been there to support me ... and I really need him for the things that I am going to go through as I grow up,” Santi said.