Omar spent a recent morning like most teenagers — browsing YouTube videos ranging on topics from tech to anime.But Omar wasn’t swiping through the videos with his fingers. The 19-year-old, who has Duchenne muscular dystrophy, uses his eyes to control the tablet, and he spends his days on a hospi tal bed that sits in the family’s small suburban living room. A window next to his bed looks out to their apartment complex. An entertainment center — decorated with Dragon Ball Z figurines — serves as storage for medical supplies to help care for the teen.His parents, Mahmoud and Asmaa, are his caretakers with his mother often sleeping next to him on the family’s beige and red couch. The Sun-Times is not using the family’s last name due to their pending application for permanent residency. Omar’s parents say they worry what will happen to his health come Oct. 1 when they, along with an estimated 9,300 other immigrants in Illinois, are expected to lose Medicaid coverage.“They’re caught between two fronts, really,” said Al Peters, director of immigration services at the Syrian Community Network. “They’ve lost their benefits, and they are not getting their next step in the process — their green card.”As part of H.R.1, more commonly known as One Big Beautiful Bill, refugees will no longer be eligible to receive Medicaid, a state-federal program that provides health coverage to low-income households and people living with disabilities. It’s part of a larger overhaul the Trump administration is making to Medicaid including new work requirements.The last day of Medicaid coverage for this population will be Sept. 30. The Illinois Department of Healthcare and Family Services described the changes to Medicaid as a “cruel measure,” and said it’s the start of a larger effort to leave hundreds of thousands of people in the state without access to care.“We are deeply concerned about the impact to families, especially as non-citizens have fewer options to gain medical coverage. This is the result of the federal law, and unfortunately, there is no recourse for impacted non-citizens to receive Medicaid unless the law is changed,” the department said in a statement. Syrian refugees Asmaa and Mahmoud poses with their disabled son Omar, 19. at their apartment in West Chicago on Monday, Sept. 21, 2026. The family is concerned how the medicaid changes will affect the medical care their son receives.Mark Black/For the Sun-Times Refugees with permanent residency, or a green card, will remain eligible for the program, according to the Illinois Department of Healthcare and Family Services.But Omar’s family, who fled Syria, have been left in limbo as the U.S. Citizenship and Immigration Services has slowed the processing of green card applications. Refugees were also cut off earlier this year from another safety-net program, the Supplemental Nutrition Assistance Program.Refugees are eligible to apply for permanent residency after one year in the country. At the Syrian Community Network, more than 780 refugees from various countries are waiting for their applications to be processed, Peters said.The Syrian Community Network is pushing for USCIS to expedite Omar’s green card application, Peters said.“The process as such is designed to frustrate and disappoint,” Peters said. “But in [Omar’s] case, that has potential fatal ramifications.”Stabilizing Omar’s health On top of a wooden cabinet, one machine monitors Omar’s oxygen while another one keeps tabs on his heart, Mahmoud said. Another machine is used to help feed him every day.Mahmoud and his wife learned the intricacies of these machines that keep their son alive after arriving in the Chicago area in November 2023. Along a wall in the family’s living room, Mahmoud points to a chair they have learned to use to bathe Omar. A wheelchair tucked into a corner for the rare times they leave their apartment for doctor’s appointments.“The situation for Omar now is stable,” Mahmoud said in Arabic through a translator. Syrian refugee Omar, 19, needs various medical devices to survive.Mark Black/For the Sun-Times Omar’s health had gotten worse just before the family, which includes two other children aged 18 and 12, were allowed to enter the United States through refugee resettlement, they said.Omar was diagnosed with Duchenne muscular dystrophy as a child, his parents said. People who have this type of genetic neuromuscular disorder are missing dystrophin, which helps keep muscle cells together and its absence leads to injury and loss of muscle function, according to the Muscular Dystrophy Association.By 2016, the family had relocated to Egypt when Omar lost the ability to walk on his own, Mahmoud and Asmaa said. He was still able to eat on his own, but the family struggled to keep up with the physical therapy he needed and prioritized buying the medicines he needed, they said.Then in January 2023 — just before they were scheduled to travel to the United States — Omar was hospitalized, Mahmoud and Asmaa said. He was no longer able to eat and breathe on his own and remained hospitalized for about a month and a half, they said.Eventually they were able to travel to Chicago, and Omar spent his first months in the U.S. in late 2023 in various hospitals before his parents underwent a program that helped them learn how to become his caretakers, allowing Omar to live at home, his parents said. Mahmoud attends to some of the medical devices used by his disabled son Omar in their West Chicago apartment on Monday, Sept. 21, 2026.Mark Black/For the Sun-Times “We need two people to take care of him, day and night because his situation is very dangerous,” Mahmoud said in Arabic through a translator, adding that every machine needs to work properly in order to keep him alive.Medicaid covers all of the equipment in the family’s living room that has become Omar’s makeshift care center, they said. The program also pays each month for their work as caretakers, Mahmoud said.Asmaa, who tends to her son every time a machine beeps, would rather keep him at home, recalling how red his face turned anytime they left him in a hospital alone for a few hours.“He’s not going to be comfortable at the hospital because he doesn’t speak very good English,” Asmaa said through a translator. “He’s going to be so anxious not understanding the language.”‘Living for our kid’Refugees had been eligible for Medicaid since at least 1996 though it’s likely they were eligible even before then, said Andrea Kovach, senior attorney with the Legal Council for Health Justice in Chicago.The new eligibility changes will also result in a loss of coverage for immigrants seeking asylum and those who entered the country through humanitarian parole, such as those fleeing the war in Ukraine, according to the Illinois Department of Healthcare and Family Services. Other immigrants like naturalized citizens, permanent residents, children and pregnant individuals will remain eligible.U.S. Rep. Delia Ramirez, whose district includes the suburb where Omar’s family lives, couldn’t comment on specific cases her office is helping, but said many families are being devastated by federal changes.“While my office is here to support my constituents in navigating their federal cases, it is clear we need bold legislation to address families' fear of losing their insurance. I will continue to fight for Medicare for All and everything working families need to thrive,” Ramirez said in a statement. Asmaa attends to her disabled son Omar in their West Chicago apartment on Monday, Sept. 21, 2026. Mark Black/For the Sun-Times Uninsured immigrants can still turn to community health centers, but advocates worry the change will increase avoidable hospital emergency room visits, Kovach said. That’s because refugees will remain eligible for emergency Medicaid, which is a way for a hospital to get reimbursed for treating an uninsured person facing a life-threatening health emergency.“It has to be a serious medical emergency,” Kovach said. “That’s obviously not the most efficient way to get your healthcare. It’s not where individuals should go to get preventive care and screening.”Refugees can purchase health insurance through the Affordable Care Act, known in the state as Get Covered Illinois, Kovach said. But starting in January, refugees will no longer be eligible for tax credits that make buying insurance through the marketplace more affordable, she said.“Even though all of the qualified immigrant groups are technically eligible for ACA coverage after Jan. 1, they will no longer be eligible for the tax credits,” Kovach said. “That eligibility is really meaningless. It’s hollow.”In mid-September, Mahmoud received a letter from Get Covered Illinois encouraging them to buy insurance through the marketplace.“You are receiving this notice because the Illinois Department of Healthcare and Family Services has determined that one or more members of your household do not qualify for Medicaid or All Kids,” the letter stated.But as Mahmoud lists the family’s expenses — rent, utilities and phone bills — he’s not sure how they could afford to make ends meet without Medicaid. Mahmoud said he can get by without health insurance, but he says his son needs to stay on Medicaid.“We are here, living for our kid,” Mahmoud said in Arabic through a translator. ...read more read less