‘He reached his limit.’ Immigrant father of 5-year-old with brain cancer accepts deportation to Bolivia after months in ICE detention.
Johny Merida Aguilara cared for his 5-year-old son, who suffers from brain cancer, until ICE detained him in September. He and his family are returning to Bolivia.
In the end, the pressure on the family simply became too great.
Johny Merida Aguilara, the detained immigrant father of a 5-year-old son with brain cancer, has decided to drop efforts to stay in the United States and accept deportation to Bolivia.
His wife and three American-citizen children will also leave the country, though they are not required to do so, departing their Northeast Philadelphia home to reunite with their husband and father in the central Bolivian city of Cochabamba.
The decision to go comes as Merida Aguilara, 48, approaches his fifth month in immigration detention ― with no end in sight. The family’s forced separation has been emotionally devastating, friends and supporters said. And with Merida Aguilara in custody and unable to work, the financial situation for his wife and children was growing desperate.
» READ MORE: He was caring for his 5-year-old son with brain cancer. Then he was detained by ICE.
Merida Aguilara had been a main caregiver for his son, Jair, who has been treated at Children’s Hospital of Philadelphia, and whose future is now deeply uncertain. Quality healthcare can be lacking in Bolivia, where the U.S. State Department warns that “hospitals cannot handle serious conditions.”
Jair has autism and a severe eating disorder, surviving on PediaSure nutrition drink delivered through a plastic syringe. He generally would accept food only from his father, and Merida Aguilara would leave work during the day to feed his son.
The father was arrested by ICE for an immigration violation during a September traffic stop on Roosevelt Boulevard near Hunting Park Avenue, having lived in the United States without official permission for nearly 20 years.
“I am tired,” Gimena Morales Antezana, his wife, said in an interview with The Inquirer. “We have been trying to survive, but it is difficult with the children because they miss their dad so much.”
U.S. Immigration and Customs Enforcement officials did not reply to a request for comment on Thursday.
The family has received strong community support, Morales Antezana said, but that could not continue indefinitely, and at this point she can no longer afford rent, water, or heat,
Son Matias, 7, cries himself to sleep most nights, calling out for his father to come home. His sadness deepened after Christmas, turning into anger when Morales Antezana finally revealed that his father was not away on an extended work trip, but was being held by immigration authorities at the Moshannon Valley Processing Center, an ICE facility in central Pennsylvania.
Daughter Melany, 13, now feels unsafe in the U.S., her mother said. Teenage insecurities have bloomed into a persistent sense of danger, and she told her mom that leaving might be the only way to feel comfortable again.
Jair cries inconsolably every time he sees or hears his father on the phone, asking why his dad can’t be home, Morales Antezana said.
All three children were born in this country and are U.S. citizens by law.
Some good news came this month. Doctors told Morales Antezana that Jair’s brain tumor had not grown, allowing time to try to find care in Bolivia.
“This is going to be a constant struggle every day until God decides,” Morales Antezana said. “It’s scary to think that if something happens we don’t have a hospital to take him to, but knowing his dad will be there makes it a little lighter to bear.”
Morales Antezana, 49, had to stop working in 2020 to handle the nearly full-time demands of Jair’s health, taking him to see specialists and undergo treatments while also caring for Melany and Matias.
She has not been ordered deported while she has pursued legal means to stay in the country. Mother and children plan to voluntarily depart this month, while the precise timing of Merida Aguilara’s deportation is uncertain.
“He couldn’t do it anymore; he reached his limit,” said Philadelphia immigration attorney John Vandenberg, who represents the family. “It’s a tough environment in the jail.”
Vandenberg won relief in the U.S. Court of Appeals for the Third Circuit, which issued a Sept. 30 order to temporarily block Merida Aguilar’s deportation. The lawyer also applied on Morales Antezana’s behalf for a T visa, which can bestow a path to citizenship on victims of human trafficking and their families.
But time has gone on with no sign from the government as to when that visa application might be considered.
Merida Aguilar and his wife were given permission to legally work in the U.S. under her 2024 claim for asylum, which could enable both to live here permanently if granted. The Trump administration, however, has made it increasingly difficult for people to succeed on those claims.
Vandenberg said Merida Aguilar has no criminal record in the U.S., and Bolivian authorities provided documentation showing he had committed no offenses in that country.
His efforts to remain in the U.S. have been complicated by a previous deportation, when he tried to enter the U.S. east of San Diego in 2008. Immigration officials sent him to Mexico, but Merida Aguilar secretly crossed back into the U.S. almost immediately.
Now he and his wife want their children to be in Bolivia in time for the new school year, which starts in February.
“I want to make sure our kids can study,” Morales Antezana said, “so they can decide who they want to be in the future, and come back [to the U.S.] as professionals with a different story than us.”
Her parents, and a son from a previous relationship, are eager to see them in Bolivia.
She said she is looking forward to what many people might take for granted ― hugging her partner, watching him play with their children, enjoying a meal as a family. That helps ease the pain of saying goodbye to a city she sees as home and to the friends who tried to help.
“They kept me strong and helped me not get more depressed,” Morales Antezana said. “I’m going to miss everything about Philadelphia. It hurts a lot to have to leave because there are good people here.”