PALO ALTO, California -- An Armenian family is hoping they can extend their visa to stay in the U.S. and continue medical procedures that they believe will extend their 20-month-old son's life.
When Aleksandr was one month old, his parents noticed he was having trouble breathing and moving his hands.
Medical testing in Armenia found he had spinal muscular atrophy, a genetic disorder that affects the nervous system and muscles. Aleksandr has Type 1, the most severe type.
He was selected for an 11-month clinical trial at Stanford hospital that changed his life and brought his family to the U.S. on a temporary visa.
"He needs permanent follow up and permanent treatments for lungs and for physical and occupational therapy," said Aleksandr's mother, Svetlana Sargsyan.
"Now he can sit for more than 30 minutes without help. He can move his arms and play," said Sargsyan.
The Kostanyan family's visa will expire in September. They're hoping to stay in the U.S. legally and start a second trial to strengthen Aleksandr's muscles.
"Maybe it'll have side effects. I don't know how many years it will keep Aleksandr alive, and we must be ready to have another drug. In America, there are other drugs that can help keep him alive," said Aleksandr's dad, Tigran Kostanyan.
Stanford's hospital's press official said they couldn't comment on this case.
Bay Immigration Law sees cases like this and says options to extend visas are on a case-by-case scenario, but the Kostanyan family might have an option since the dad is an IT professional in Armenia.
"Since both parents are professionals, I suggest for the father to try to apply for the extraordinary ability visa 01, since he has several publications and conference publications in Armenia," explained Bay Immigration Law Managing Partner Yana Sergeievna Albrecht.
The Kostanyan family has opened a GoFundMe account to raise funds and move out of the Ronald McDonald House where they've been staying for the last year.
They're hoping to raise enough funds to move on their own and start a new life in the U.S. and continue medical trials to extend their son's life.
Family hopes to stay in U.S. to continue medical treatments they say will help son live