Alma Kashkooli can barely talk, walks with great difficulty and is prone to seizures. And if this 11-year-old Iranian girl does not get to the United States quickly, she will likely go blind.
Her mother, Farimah Kashkooli, was supposed to be at Pittsburgh Children’s Hospital last Tuesday helping Alma prepare for a long list of life-saving medical procedures, including eye surgery.
Instead, the Fordham University law student is grounded in her nearly empty Manhattan apartment while her little girl is stuck 6,000 miles away in her native Iran, one of seven Muslim majority countries that were subject to a temporary travel ban imposed on Jan. 27 by the Trump Administration.
Kashkooli, 33, could not leave New York to get her daughter as scheduled because the ban meant she would not be allowed back.
“I got shocked,” she told The Post. “I cried. I wanted to leave because I realized there was no way to bring Alma for surgery.”
Alma was scheduled to leave Tehran last week, and had already obtained a US visa. She was supposed to be accompanied by her father. But when he could not obtain a visa, Kashkooli prepared to make the 20-hour trip to Tehran to bring her daughter here.
Friday’s ruling by a Seattle judge lifting the travel restrictions has created more uncertainty for Kashkooli because of the administration’s intention to fight it. She worries if she leaves now, she might not be allowed back with Alma.
Alma is one of hundreds from the seven countries whose medical care in the US has been jeopardized by the travel ban, experts said.
Gov. Cuomo announced Friday that a 4-month-old girl from Iran had been granted a waiver to enter the US for heart surgery, which will be donated by doctors at Mount Sinai Hospital in Manhattan.
In Alma’s case, doctors across the country, including those at the government-run National Institutes of Health, already know her and have done landmark research on her rare condition.
She suffers from what is known as a congenital disorder of glycosylation or CDG, which impairs the ability of cells to communicate with each other. It can have wide-ranging and devastating effects. Only 20 or so people around the world are thought to suffer from her form of CDG.
“I can’t just sit in the corner and say ‘OK, I will have a blind child,’” said Kashkooli. “I have fought for every single moment of my child’s life.”
Alma has been coming to the US for treatment since 2007 and her condition was diagnosed at the Mayo Clinic in Minnesota.
Alma also had a week-long stay at the National Institute of Health in Maryland in 2014, where experts analyzed every aspect of her condition to not only help her, but others with the disorder.
“We have traveled to 39 states, and I have received such kindness from so many people in America,” her mother said. “And I am happy to know that the research in Alma’s case has already benefited other children here.”
Kashkooli, who has a student visa and is on a partial scholarship from Fordham Law School specializing in international humanitarian law, now finds her daughter a desperate test case in her own field of study.
She was working with an immigration lawyer and Sen. Kirsten Gillibrand to get a medical waiver for Alma.
Before Friday’s ruling in Seattle, the State Department had revoked tens of thousands of visas from those trying to enter US and said the visas for those already here would be cancelled if they leave.
“We have a short window of time where it seems the visas are valid again. All of this is changing so quickly there’s no way to figure out what this means long term,” said Shaimaa Hussein, Kashkooli’s lawyer.
Gilibrand’s spokesman said his office had reached out to the State Department on Kashkooli’s behalf.
“I believe there has to be a commitment to humanity,” said Kashkooli. “Even in times of conflict, you have humanitarian law.”
And she had a special message for President Trump: “Please, when you look at your son, think about my daughter.”
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