Facing visa troubles, Armenian family worries about ill son's future | August 23, 2019 | Palo Alto Weekly | Palo Alto Online |

Palo Alto Weekly

News - August 23, 2019

Facing visa troubles, Armenian family worries about ill son's future

Stanford Hospital clinical trial helped boy to move arms, legs again

by Maya Homan

When Svetlana Sargsyan and Tigran Kostanyan welcomed their second child in December 2017, they were overjoyed. Their son Aleksandr was a happy, healthy baby. However, within weeks, Aleksandr became less and less mobile, unable to sit up or move his arms and legs. Sargsyan and Kostanyan took their son to doctor after doctor in their hometown of Yerevan, Armenia, and when he was 52 days old, he received a diagnosis: spinal muscular atrophy Type 1 (SMA).

The family has been in the United States since March 2018, staying at the Ronald McDonald House at Stanford while Aleksandr participates in a clinical trial for the drug Zolgensma, which has since received approval from the Food and Drug Administration to treat SMA. However, the clinical trial at Stanford Hospital is now over and the family's visas are set to expire in September, meaning that Aleksandr and his family may have to return to Armenia, where he will no longer have access to treatment.

SMA is an autosomal recessive genetic disease caused by a mutation. Cells with this mutation can't produce a protein called survival motor neuron (SMN), and without it, nerve cells begin to die, according to CureSMA, a national nonprofit that funds SMA research. This prevents people from being able to control muscle movements and eventually leads to difficulty swallowing and breathing. Babies with Type I SMA like Aleksandr typically start showing symptoms a few months after birth. As the neurons continue to die off, infants have a harder time swallowing and breathing, and those with Type 1 SMA generally don't live past 2 years old.

When Aleksandr was first diagnosed, his parents took their son to specialists in Armenia, all of whom told the couple that their son's condition was incurable.

"The doctors from Armenia didn't know about the treatments," Kostanyan said. "They thought there were no treatments. They said, 'You will lose your baby. Go home.'"

But the couple did not give up. They reached out to other countries, including France, Belgium and Canada, searching for a treatment and scoured government clinical trial sites until they found the study at Stanford Hospital that focused on Type I SMA.

After looking over his test results, doctors at Stanford determined that Aleksandr was likely a good candidate for the study. They brought him to the U.S., conducted more tests and admitted him into phase three of the AveXis clinical trial, which tested the drug Zolgensma. At 3 1/2 months old, Aleksandr received the drug, which works by replacing the defective SMN1 gene with a functional one so that cells can produce their own SMN protein.

The treatment, Sargsyan said, has been transformational. Aleksandr regained his ability to move his arms and legs; control his head and neck muscles; and sit up for short periods of time. He has been attending physical, occupational and aquatic therapy for the past year to help strengthen and develop his muscles.

However, despite all of Aleksandr's progress, he still requires extensive treatment and therapy. He has difficulty eating and swallowing, and his parents must take extra precautions to ensure that he doesn't develop pneumonia or other respiratory illnesses. He relies on a stroller to get around and wears a special brace to correct his scoliosis.

The family is currently working with a paralegal to change their B-1 visa to one that would allow them to stay and work in the U.S. legally, and they have started a GoFundMe campaign with a goal of raising $100,000 to help cover the cost of staying in California. Remaining in the U.S. would allow Aleksandr to continue receiving physical therapy and educational programs designed for children with SMA, who are often very bright but cannot be in a traditional classroom setting where they would have to sit up or stay in one position for long periods of time.

Despite the overarching uncertainty about their future, the family has been settling in to their new life in the Bay Area. They've been attending services at an Armenian church in Cupertino and their older son, Davit, recently started seventh grade at JLS Middle School.

Sargsyan and Kostanyan worked as teachers in Yerevan, Sargsyan as a science and technology teacher at a French language school and Kostanyan as an information technology professor at a university. They have been looking for jobs in the area, although Sargsyan said they may need to take some English classes and get an American teaching certification first. She's looking into other fields, such as translation, where she could take Aleksandr with her.

Still, the family says, they are immensely grateful for the help they have received here from the doctors, CureSMA, AveXis and community members, and want to find a way to give back.

"We want to do something good for this country," Sargsyan said. "We had no hope, we had nothing, and suddenly, (America) saved the life of this treasure."

Editorial Intern Maya Homan can be emailed at mhoman@paweekly.com.

Comments

19 people like this
Posted by bill1940
a resident of Menlo Park
on Aug 21, 2019 at 1:32 pm

My wife, daughter and I do wish this beautiful family all the best. They certainly merit a change of VISA status that will enable them to work here as well as continue the life-long treatment that is required for their "little treasure" of a son.


16 people like this
Posted by VISA Should Depend On Treatment Options
a resident of Barron Park
on Aug 21, 2019 at 5:24 pm

If the treatment program has been discontinued at Stanford, what difference would it make if they went back to Armenia?

If the treatment program is resumed or some breakthrough is announced, then I could see them being granted an extended VISA.

This immigration issue is getting out of hand.


6 people like this
Posted by Resident 1-Adobe Meadows
a resident of Adobe-Meadow
on Aug 21, 2019 at 6:29 pm

Resident 1-Adobe Meadows is a registered user.

Suggest that you contact your local legislators who have Armenian heritage and are probably well connected in the right places. Anna Eshoo, Jackie Spier (mother), Joe Simitian. The Armenian community is very extensive in the state of CA. There is a consulate in LA - Burbank.


7 people like this
Posted by MAGA
a resident of Another Palo Alto neighborhood
on Aug 22, 2019 at 1:35 am

[Post removed.]


5 people like this
Posted by Mayron
a resident of Old Palo Alto
on Aug 22, 2019 at 8:28 am

Tough one...I can see both sides. Program is over. Does the US follow the rules and send them back or make an exception? Also, go fund me account should not be used...this decision should be the US government.


7 people like this
Posted by Advisor
a resident of Esther Clark Park
on Aug 22, 2019 at 5:01 pm

Perhaps they can go to Moscow to get the treatment? Armenia uses to be under Soviet Union ...


8 people like this
Posted by MAGA
a resident of Another Palo Alto neighborhood
on Aug 23, 2019 at 6:47 pm

My post was not offensive. All I said was that they are educated and can contribute to our country. People get click happy when they read "MAGA".


7 people like this
Posted by Tired of Immigration Abuses
a resident of another community
on Aug 24, 2019 at 1:58 am

"Suggest that you contact your local legislators who have Armenian heritage and are probably well connected in the right places."

The parents will not need to go through that much trouble.

Instead, I'd guess they will (ab)use the time-honored immigration loophole called Having An Anchor Baby.

This loophole should have been plugged decades ago.


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