Six-year-old Pakistani with rare genetic disorder desperately awaits US visa

Family has been refused visa twice by US Embassy in Islamabad

A desperate Pakistani family is anxiously waiting for their US visas so they can take their ailing six-year-old daughter for treatment.

Maria Shahid is suffering from a rare genetic disease that has left her frail body wracked with pain and stunted her growth. Known as Morquio Syndrome, soon she will be unable to walk because her vertebrae are compressing her spinal cord.



A US hospital has offered to perform surgery for free that could significantly improve Maria's quality of life. The Nemours Foundation in Delaware first reduced the cost of the $100,000 surgery to $82,000, but when it was clear the family could not afford it, the hospital said it would cover the full cost of the procedure. "The hope is to do the surgery for the child without any cost to the family," said Chris Manning, who is with the Nemours Children's Health System public relations department.

Unfortunately, the US Embassy in Islamabad has so far twice refused to grant the family visas to travel to the United States, according to Maria's father. "When I submitted the visa application again, they [US embassy] told me it will take time," the father said. Shahid Ullah, who runs a small store selling blankets in Rawalpindi, has turned to an American lawyer, Facebook and the media for help.



US Embassy spokesperson Fleur S Cowan has declined to comment on Maria's case, citing privacy laws, but said she would look into the matter. US State Department said visa records are confidential under US law and that it could not "comment on the specifics of an individual visa case."

The surgery in the US has been scheduled for November 2. Shahid Ullah said Maria has to be in the United States by next Wednesday for pre-surgery tests. "If we delay Maria's surgery, there will be too many problems," he said. "I don't know what to do, who should I contact. Maria is in a lot of pain now...she can no longer hold a pencil or a pen."

"I have spent nearly four years, researching her condition, sending her blood and urine samples to laboratories in India and Germany, connected with families of children with the same disorder," Shahid Ullah said.



Through the internet, he tracked down doctors with expertise in Maria's condition and families with children who suffer from the same disease from countries as far as Chile, Britain and America. "From all over the world parents with children with the same disease helped me, they were so kind," he said. Families with children like Maria also began crowd funding on Facebook for the six-year-old.

Melissa Harms, a California-based lawyer, offered to help pro bono when she heard of Maria's troubles from a client whose child has the same disorder. "I was appalled," she said. "Housing for the family in the US has been arranged and the airline tickets have been donated and all of this will go to waste if we can't get these visas approved this week," she said.

This story originally appeared on Fox News.