disease

Father Faces Deportation as Son Battles Rare Generic Condition

A Connecticut father is facing deportation back to his native country, Colombia while his 14-year-old son battles a rare genetic condition.

“I am the support for my family,” Julian Rodriguez told NBC Connecticut.

He is waiting on news for a request for stay in the United States from ICE.

Julian came to the United States 18 years ago seeking political asylum from Colombia. That ended in 2009, and he has been giving numerous stays based on his son Santiago’s treatments. Santiago has a genetic immune deficiency disorder and undergoes treatment at Connecticut Children’s Medical Center.

“It occurs in about one in 200,000 kids,” said Dr. Juan Salazar, physician in chief at Connecticut Children's Medical Center. “So it is extremely rare, but it is devastating. Kids who have the disease sometimes grow into adulthood, but in the end universally it is always fatal.”

Santiago is doing well now after an experimental stem cell therapy at the National Institutes of Health. He and his family are part of a study there that aims to help other kids like him.

“His care needs to be done in the United States,” Salazar said. “This is something that cannot be done elsewhere. This is something that has contributed to the health care of children.”

Congressman Joe Courtney and Sen. Richard Blumenthal are standing behind them.

“We are going to fight,” Blumenthal said. “Vamos a luchar. Just as Santi has fought. We must fight for him. Our values as well as our medical research depends on Santee and his family staying here.”

“I don’t know what I would do, or be doing here without my dad,” Santiago Rodriguez said. “He’s helped me through so much during my life. He’s always been a support and I really need him.”

Rodriguez’s attorney says he’s trying to comply with ICE’s orders. He has a plane ticket for September 12, but he’s hoping he doesn't have to use it.

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