Desperate Pakistan family awaits US visa for 6-year-old with rare genetic disorder

A desperate Pakistani family anxiously awaiting a U.S. visa for their ailing little girl is running out of time: Maria is just six years old but a rare genetic disease has left her frail body wracked with pain and stunted her growth.

Soon she will be unable to walk because her vertebrae are compressing her spinal cord.

A U.S. hospital has offered to perform a surgery for free that could significantly improve Maria's quality of her life, but the American Embassy in Islamabad has so far twice refused to give the family visas to travel to the United States, said the girl's father, Shahid Ullah speaking to The Associated Press by phone from Rawalpindi in Pakistan.

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When he submitted a visa application again, he was told it will "take time," he said. Frustrated and frightened, Ullah has now turned to an American lawyer, Facebook and the media for help, starting a campaign he says could be his daughter's last resort.

The surgery in the U.S. has been scheduled for Nov. 2 and Ullah is pleading with anyone who will listen that Maria's "case is different."

"If we delay Maria's surgery, there will be too many problems," said Ullah, who runs a small store selling blankets in the town of Rawalpindi, near the capital of Islamabad. He said Maria has to be in the United States by next Wednesday for pre-surgery tests.

He said he embarked on the tortuous quest to find help for Maria nearly four years ago, researching her condition, sending her blood and urine samples to laboratories in India and Germany, connected with families of children with the same disorder, known as Morquio Syndrome.

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 steered him to the Nemours/Alfred I DuPont Hospital for Children in Wilmington, Delaware.

"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 rallied behind Ullah and began crowd funding on Facebook .

Unlike in previous attempts to get a U.S. visa, when Ullah applied for the entire family and was told U.S. authorities feared they would not return to Pakistan, this time he said he only applied for a visa for Maria, himself and his wife. He plans to leave his other two children, a 7-year-old daughter and a 2-year-old boy, behind with relatives during their stay in America, which is expected to take five months.

"I don't know what to do . . . who should I contact," he says. "Maria is in a lot of pain now ... she can no longer hold a pencil or a pen."

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

The Delaware hospital first reduced the cost of the $100,000 surgery to $82,000, Ullah said, but when it was clear he could not afford it, the Nemours Foundation 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, adding that the hospital has done multiple surgeries such as the one required for Maria.

He added that the hospital also sent documentation to the embassy in Pakistan to facilitate Ullah's visa application.

Melissa Harms, a California 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. In an email to The Associated Press Harms said that housing for the family in the U.S. has been arranged and "the airline tickets have been donated."

"All of this will go to waste if we can't get these visas approved this week," she said.