The Armenian family of a 19-month-old boy with a rare disease who is part of a medical trial in the United States is hoping for a miracle—they need a visa extension to stay in America, so he can finish the trial.
The toddler, Alexander Sargsyan, was diagnosed with spinal muscular atrophy by an Armenian neurologist after he stopped moving when he was just a month old. The disease is known to rob people of physical strength, taking away the ability to walk, eat or breathe.
The boy’s parents, Svetlana and Tigran Sargsyan found hope for their son through a medical trial at Lucile Packard Children’s Hospital at Stanford University. The gene therapy began to work, and Alexander is learning to talk. But now, the family’s medical visa is set to expire at the end of September.
“We need to stay here,” said his mother. “It’s gene therapy, it’s a trial and we don’t know how long it could be helpful…we tried to change our visa type to stay here legally.”